EFA

Today, on 5 May, the EFA Community marks World Asthma Day 2026 under the theme #EmpoweredToBreathe – taking control of asthma every day. 

Across Europe, EFA members are sharing one common message: people with asthma need timely diagnosis, clear information and care they can rely on in daily life. 

That message comes from many different national realities, but the concerns are similar. For some, the challenge begins with symptoms that are easy to dismiss such as a cough that keeps coming back, breathlessness, or signs that come and go until daily life starts adjusting around them more than it should. For others, the challenge comes later: understanding treatment, using inhalers correctly, following a management plan, or continuing to get the right follow-up as life changes. 

Community messages and actions across Europe 

Across the EFA Community, members are sharing what better asthma care looks like in practice: being able to recognise symptoms earlier, helping people reach the right diagnosis sooner, making tests such as spirometry more accessible and giving patients the tools to manage asthma with more confidence. 

They are also showing what this means in daily life: management plans that work outside the clinic, better communication with healthcare professionals, support for young people growing up with asthma and more space for patients to talk openly about how asthma affects their lives. 

Several member organisations are also marking the day through local activities and public engagement, using World Asthma Day not only to raise awareness, but also to create spaces where patients can learn, connect and feel heard.

Why information is essential for good asthma care 

At the heart of this year’s theme is the idea that information and education are essential to good asthma care. Patients are better placed to act when they understand their symptoms, know what treatment options are available and have practical tools to manage asthma with more confidence. That is especially important for people who are newly diagnosed, for families supporting children with asthma and for teenagers learning to manage their condition more independently. 

Practical information for patients and carers at AboutAsthma.org 

To support this year’s action, EFA is highlighting AboutAsthma.org, its educational website for patients and carers. The website offers practical information on symptoms, attacks, care, daily life and support, alongside a dedicated resource page with materials shared by patient organisations across Europe. The resource page also brings together community materials in different formats and languages, including apps, brochures, action plans, videos, websites and other practical tools developed by EFA members across Europe. AboutAsthma.org is currently available in English, Spanish, French and Italian. 

On this World Asthma Day, EFA invites patients, carers and advocates to explore the website and follow the action on social media. Through #EmpoweredToBreathe action, the EFA Community is making the case for asthma care that is clearer, more practical and connected to real life. 

Thank you to all the EFA members who are sharing their knowledge, messages and resources across Europe!  

Imagine you are a patient participating in a clinical trial and half-way through it is modified or postponed due to an ongoing public health emergency (PHE) in your country. What would happen in the EU? To address this, in March 2025, the Accelerating Clinical Trials in the EU (ACT EU) Initiative published a draft guidance document outlining how clinical trials should be conducted during PHE and opened the document for comments. EFA, with the support from its members, replied to the consultation and shared specific recommendations from the patient perspective.  

EFA welcomes EU-level action on crisis response, which is the first of its kind to reflect the current EU legislative framework and international guidelines. However, even though the EU responded well in collaboration during the COVID-19 pandemic, more measures are needed so we can be resilient and collaborative against PHE threats, and that patients, alongside healthcare professionals through their organisations are integral part of the process. 

Read more about our response to the consultation below. 

What does the guideline say?  

The ACT EU initiative was launched in January 2022 by the European Commission, the EMA and Heads of Medicines Agencies (HMA). ACT EU is a multi-annual programme aiming to create a favourable environment for research and development in life sciences, through harmonisation, innovation and collaboration with stakeholders. This initiative shows the effort that the EU is taking post-COVID to prepare for PHE and crises.  The guideline will influence the upcoming EU Biotech Act and Clinical Trial Regulations, and these efforts are also in parallel to the ongoing work of the EU’s Health Emergency and Response Authority (HERA) in crisis management.  

The recommendations in the draft guidance are a way to streamline new clinical trials and changes to ongoing trials to generate clinical evidence. The guideline lays out the changes to ongoing clinical trials and adaptations and the responsibilities of all those involved in the process, from the regulators to the sponsors (pharmaceutical companies), and ultimately, patients. 

EFA’s priorities  

1. Consider the people involved in a clinical trial as participants, but also as patients: Patients are not prioritised in the draft guideline, yet they are the most vulnerable to changes and adaptations to a clinical trial. Patients, as a specific group of trial participants should be mentioned. 

2. Focus on both participant and patient safety and health: Participant safety is mentioned throughout the text, however there is also a need to protect the health of those participating in the trial. EFA urges EMA to include measures which protect the health.  

3. Improve the definitions of ‘urgent medical need’ and when the national competent authorities can make changes ‘where necessary’: EMA needs to be clearer on the criteria for these definitions as ultimately any changes impact patients the most.  

4. Strengthen EMA’s regulatory support to sponsors: Sponsors are given the chance to make adaptations to the clinical trials without prior approval and this may not reflect the need from the public, unless it is clearer how, and making sure it is patient centered.  This should be monitored closely by EMA.  

EFA agrees with EMA that coordination at national and EU level is important to avoid unnecessary duplication, ensure optimal use of resources, and facilitate the generation of meaningful trial results and urges the EU to facilitate this coordination and collaboration, while consulting with patients and patient organisations to hear the real lived experiences of these adaptions. Patient health and safety should be protected first of all when adapting clinical trials, even in a PHE. As a community, EFA has experience from our members what happened unilaterally during Covid-19 for patients with allergies, asthma and COPD in trials and clinical practice, for instance on delaying critical diagnosis methods such as spirometry as others considered it as not safe. 

EFA notes that the guidelines will be kept up to date with future EU legislation and guidance and will be revised once the Clinical Trial Regulation amendments and European Biotech Act are adopted. EFA looks forward to seeing these changes come into fruition and recommends more EU efforts to address public health crises, including involving patient organisations who have the link to their communities. 

Next steps 

Thank you to EMA for the opportunity to comment on this draft guidance! 

Next, the ACT EU team, the Emergency Task Force (ETF) and the PHE Ethics Advisory Group will review the consultation responses and eventually the revised final publication of the guidance will be published.  

The EFA Community gathered in Malta for its Annual General Meeting and Community Meeting, hosted by the Malta Eczema Society. 31 member organisations from 21 countries came together for two days of shared work, peer learning and a special celebration: 35 years of EFA. It was a moment to reconnect look ahead at what still needs to change for people living with allergy, asthma, COPD and atopic eczema across Europe.

Annual General Meeting 2026: new leadership and a growing community

The AGM marked the end of Marcia Podestà's six years on the EFA Board, where she served as Board Member, Vice President and President. EFA Director Susanna Palkonen thanked her: "Marcia, you led with integrity and warmth and you strengthened EFA through every step." Former EFA President Mikaela Odemyr: "You kept the EFA spirit strong and you lifted the whole community with you."

The Community thanked Marcia for her work and commitment and welcomed its new Board.

Károly Illy, CEO of Longfonds, becomes EFA President. Simone Miles, Chief Executive of Allergy UK and current EFA treasurer becomes Vice President. Georg Kneer, a volunteer from the German Allergy and Asthma Association (DAAB), joins as a new Board member. We also thank continuing Board members Anna Andrałojć from the Polish Federation of Asthma, Allergy and COPD Patients Associations and Fríða Rún Þórðardóttir from the Icelandic Asthma and Allergy Association for their ongoing leadership and commitment to EFA Community.

The AGM marked a proud moment of growth for the EFA Community, with three new member organisations joining: Asma y Alergia España, PHURDA from Ukraine, and Allergic Compass from Slovenia. EFA now counts 38 members in 24 countries.

Asma y Alergia España works to represent and empower people affected by asthma and respiratory allergies in Spain by promoting equitable access to diagnosis, treatment, education, and support, while advancing awareness, research, and innovation.

Pulmonary Hypertension Ukrainian Rare Disease Association (PHURDA) works to improve the lives of people suffering from chronic respiratory conditions in Ukraine.

Allergic Compass is a recently founded organisation that aims at improving the quality of life for people living with allergies, allergic diseases and urticaria in Slovenia.

Finally, EFA AGM approved the 2025 EFA activity report and accounts as well as the 2026 EFA workplan and budget.

Atopic Eczema #BreakTheInvisibleBurden and Atopical Lives photo exhibition

A distinctive feature of this year's meeting was the presence of the Atopical Lives photo exhibition, which travelled to Malta as part of the Atopic Eczema #BreakTheInvisibleBurden campaign. The portraits and lived experiences of people with atopic eczema were brought into the heart of the meeting.

As EFA President Marcia Podestà highlighted: "Over 200 million people in Europe live with allergies, asthma or COPD and the World Health Assembly resolution on skin diseases and integrated lung care create a real opportunity for national action. For atopic eczema, our asks stay the same: improve access to care and treatments, reduce the financial burden, and take the mental and social burden seriously."

EFA Community was pleased to welcome Malta's Minister for Health, Dr Jo Etienne Abela, who spoke about supporting patients in smaller countries and the value of working through organisations like EFA. "I am keen on having the Malta Eczema Society work through EFA as a channel of communication and I believe together we can do great things," he said. Michael Boffa, President of the Malta Eczema Society, also spoke about what patients face in their daily lives and why access to the right treatment is still uneven.

Community Meeting: working together across borders

The second part of the two-day event was dedicated to our Community Meeting, which opened with members’ working groups across EFA’s four disease areas: asthma and allergy, atopic eczema, COPD and food allergy. Members shared what is changing in their countries, where the gaps remain for patients and what are the priorities to take forward together.

A communications and advocacy session focused on how to speak to different audiences clearly, without losing the core message. One of the meeting's highlights came in as a Jenga game that opened a genuinely useful discussion on what sustained, meaningful and transparent cooperation takes between EFA members and our sustainable corporate partners. Members and partners worked through real and complex issues such as medication shortages and pricing, uneven access across countries, different regulatory frameworks and the practical limits of information sharing in a format that encouraged honest, productive dialogue.

Members also presented projects from their own national work, which gave others the chance to learn from what is being built at home and bring ideas back to their own contexts. This included creative and interactive projects:

Pascale Couratier (AFPRAL) shared work on anaphylaxis and the use of adrenaline auto-injectors, highlighting that many parents are still afraid to use auto-injectors on children in an emergency. The campaign “Jamais sans mon adré !” focuses on improving confidence, preparedness and understanding around severe allergic reactions and life-saving treatment.

Špela Novak (Društvo Atopijski dermatitis) presented the healthcare dictionary project, which has reached 122 countries, recorded 500,000 page visits in two years, and generated more than 1 million Google searches linked to events. The initiative has also served as inspiration for international organisations, showing the value of accessible, multilingual health information for patients and families.

Tamara Smit and Nicky Wallace (Luxembourg Allergy Network) spoke about their classroom awareness sessions in response to the increasing number of students with allergies. Each session has clear objectives: raising awareness, building empathy, increasing safety and empowering children to recognise the signs of an allergic reaction and know what to do in an emergency. Activities include showing children pictures of food products and helping them identify whether they may contain tree nuts. The aim is to create empathy and practical understanding, rather than fear. Check out their “Back to school allergy checklist”.

Károly Illy (Longfonds) shared the #YourChoice vaping prevention campaign, which uses doctors and influencers to reach young people. The campaign recognises that young people want to make their own choices, and therefore focuses on giving them credible information in a format and voice they are more likely to engage with.

Alexandre Cuvello (French Eczema Association) presented “Eczema à fleur de peau / Eczema Skin Deep”, a theatre performance about living with eczema. The performance was followed by a debate with the audience, creating space to discuss the visible and invisible impact of the condition and to bring lived experience into public conversation.

The meeting closed with a respiratory sophrology session led by Liliya Belenko Gentet from our French Member organisation FFAAIR, using breathing and simple movement to energise, and close two full and networking days.

35 Years of EFA

Malta was also the occasion to mark 35 years of EFA. Members, partners, current and former Board leaders and the EFA team took a moment to recognise what has been built and the people behind it.

Susanna Palkonen: "EFA's journey has been shaped by members. Thank you to our members, the Board, partners, advocates and friends who keep showing up to improve lives."

Marcia Podestà spoke about what EFA means to her: "I found a place where I can be understood. That is what makes this community special. It is not just a network, but a community with a shared goal to improve the lives of people living with our diseases."

Incoming President Károly Illy looked ahead: "I am inspired by the strength of this community. I look forward to working together and making sure patients are at the centre of policy, research and care."

And Mikaela Odemyr, EFA former President and President of Swedish Asthma and Allergy Organisation, reflecting on nearly three decades in the community: "The most beautiful word is 'together'."

Thank you to the Malta Eczema Society for hosting, to our Community Meeting Committee for supporting us in shaping the event programme and to everyone who brought their energy and commitment to Malta. There is more work to do and we will keep doing it together for patients!

Medicines are assessed on quality, safety and efficacy. Patients and carers experience the full picture: what improves day to day, what trade-offs come with treatment and what is realistic to manage outside the hospital.

Right now, this part of the story is not always captured as structured evidence in medicine development and review. That is the gap patient experience data (PED) is meant to fill. PED brings together patients and carers experiences of living with a condition and using treatments, including symptoms, side effects, quality of life and treatment burden, in a way that can be used as evidence during medicine development and review.

In January 2026, EFA responded to the EMA stakeholder consultation on a draft European Medicines Agency (EMA) Reflection Paper on patient experience data (PED). EFA’s input reflects the needs of people living with allergy and airways diseases and their carers when it comes to medicines.

EFA Community provides input from 6 European countries

The Reflection Paper has the potential to change how medicines are reviewed in the EU. It could also improve the adequacy and appropriateness of medicines for people living with allergy and airways diseases as well as carers.

Building on steps taken by other regulators, such as the UK and the U.S. Food and Drug Administration (FDA), the EU is moving towards an approach to include patient experience data (PED) in the medicine development cycle. In this context, the European Medicines Agency (EMA) drafted a Reflection Paper on what this guidance could include and opened it for stakeholder comments.

EFA responded to the consultation with three practical messages on clearer access to information, better collection methods, and the barriers patients face. Our input was shaped through an EFA community workshop in December 2025 with patient representatives from Italy, Germany, Slovenia, Spain, Luxembourg and Austria.

Three main points raised by EFA

Make it easier to understand how patients can take part:  Patients often want to contribute, but opportunities can be hard to find and processes can be unclear. EFA encouraged EMA to work closer with national authorities to make information on how to engage with PED opportunities easier to understand. Clinical trial information should be shared further to improve patient decision-making. EFA members suggested online activities on specific medicines, such as online webinars or social media campaigns.

Improve how PED is collected so it supports decisions across the medicines lifecycle: EFA encouraged EMA to work more with patient organisations, as they deal with patient experience every day and have many sources of useful data for regulators. EMA should strengthen digital collection methods of data and develop approaches designed for specific population groups, rather than relying on one-size-fits-all tools.

Reduce the practical barriers that make engagement difficult: patients and carers face barriers such as complex language, unclear requests and websites that are difficult to navigate. EFA also noted a broader risk: when official information is hard to find or understand, people may turn to informal online spaces for guidance. EMA and national authorities should make reliable resources easier to access and use for patients and carers to make decisions without relying on fragmented sources.

EFA’s response was developed based on the EFA community workshop. We thank the following EFA members for their valuable input: Food Allergy Italia, Österreichische Lungenunion, Luxembourg Allergy Network (LAN), Federación Española de Asociaciones de Pacientes Alérgicos y con Enfermedades Respiratorias (FENEAR), Asociación Española de Personas con Alergia a Alimentos y Látex (AEPNAA), Deutscher Allergie- und Asthmabund (DAAB), Društvo Atopijski dermatitis.

Read more about our response to the consultation here.

Europe is already feeling the climate crisis. The continent is warming twice as fast as the global average, which means more frequent and intense heatwaves, floods and storms. These events also worsen other environmental risks, such as air pollution. Together, they pose a major threat on human health.

For people living with allergy, asthma, chronic obstructive pulmonary disease (COPD) and atopic eczema, the impact is often heavier. Climate-related triggers can disrupt daily life, worsen symptoms and in severe cases become life-threatening.

Climate change also carries a clear economic cost for patients, families and health systems. It drives up healthcare spending, reduces productivity and puts additional pressure on already stretched services.

Europe is not ready for the climate crisis. What do EFA patients need?

In February, EFA contributed to the European Commission’s public consultation on climate resilience. This process will inform a new European framework on climate resilience and risk management.

EFA stresses that Europe is still unprepared to face the climate change threat, both socially and politically. We welcome the focus on protecting people’s health and wellbeing and expect this to be reflected in the future framework.

To deliver real resilience, the EU approach must be supported by policies, mechanisms and interventions that cut across sectors and national systems. EFA highlights three areas that need urgent attention:

A civil protection mechanism that prioritises vulnerable groups

Civil protection measures should better reflect those who are most at risk during and after extreme events. This requires:

• Timely, accurate and standardised public information. While information exists in all Member States, it is often generic and not tailored to people who need it most, including patients with chronic conditions.
• Stronger focus on adaptation, such as national heat health action plans (HHAPs) that fully integrate health-based forecasts and alerts.
• Post-crisis health assessments, including following floods and wildfires, to mitigate the health effects in the aftermath of an extreme event.

Urban planning that mitigates the impact of climate change, especially for vulnerable populations.

Tackling the ‘heat-island effect’ means to expand green areas, climate shelters, green rooftops and cooling spaces. At the same time, greening strategies must avoid allergenic trees, which will increase the symptoms of people with seasonal allergy and allergic asthma.

Placing affected communities including allergy, respiratory diseases and atopic eczema patients, at the centre of climate resilience policies.

People living with allergy, respiratory diseases and atopic eczema should be involved in the design, implementation and evaluation of climate resilience measures. This helps ensure policies are fit for purpose, respond to real needs and can be adapted when they are not working for vulnerable groups.

EFA also welcomes the principle of ‘climate resilience-by-design’ and strongly suggests that health is integrated through dedicated climate-health indicators. We see clear opportunities to strengthen climate resilience across EU policies, including health systems, environmental legislation, construction and housing, urban planning, occupational health and safety and social policy.

Finally, the Commission has announced a web-based tool to provide non-expert information to the public. EFA supports this direction and calls for a tool that is genuinely user-friendly, accessible and visible. We encourage the Commission to provide a standardised template of minimum information, while enabling interoperability and stronger cooperation between governments. This is particularly important for people travelling across borders who need reliable guidance.

EFA and its patient community will continue engaging in this important process to ensure Europe’s climate resilience framework protects those most affected.

Read the full EFA response in this link.

The European Medicine’s Agency (EMA) has published the updated Union list of critical medicines for 2026. This list identifies medicines whose continued supply is considered a priority at the EU level. It supports coordinated work to prevent shortages and reduce the risk of serious harm to patients.

EFA provided feedback highlighting that many medicines used daily by patients with allergy, asthma, COPD and atopic eczema remain outside the priority list, despite the urgency raised by patients across Europe.

How is the Union list used?

First introduced in 2023, the Union list is designed to help EU and national authorities work from a shared set of priorities. It enables the EMA, the Heads of Medicines Agencies at national level and the European Commission to take on more proactive, coordinated measures to prevent medicine shortages and manage supply risk.

A critical medicine is identified by combining two criteria:

• Seriousness of the disease
• Availability of alternative medicines

EU Member States assign critical medicine status based on a methodology developed with input from key stakeholder groups, including patient organisations like EFA.  

EFA input into the Member State review 2025

In its stakeholder feedback, EFA highlighted medicines and groups that should remain prioritised for supply continuity and keep on the list: Cefazolin, Cefalexin, Linezolid, Fluconzanole, Voriconazole, Monoclonal antibodies and antibody drug conjugates, Budesonide in combination with formoterol, Aminophyliline, R03C Adrenergics - Beta2 agonist, bronchodilator.

What EFA sees as missing?

During the stakeholder feedback step, it was not possible to propose the addition or removal of any other active substance groups beyond the scope of the Member State review. Even so, EFA sees clear gaps for our disease areas, including medicines that help keep chronic conditions stable and reduce exacerbations. Here is the list of missing priorities:

• Antihistamines for systemic use: injectable first-generation antihistamine and oral second-generation and one third-generation antihistamine.
• Treatments for Atopic Eczema such as topicals, more innovative ones, etc. (e.g. mometasone, clobetasone, betamethasone, Baricitinib, and newer ones e.g. tacrolimus topical, tralokinumab, abrocitinib, etc.)
• A range of asthma and COPD treatments: (e.g. beclomethasone-formoterol, budesonide-formoterol, montelukast, omalizumab, tiotropium, etc.)
• RO3Ds medicines are not included in the list. EMA should consider montelukast and omalizumab critical for allergies.
• Only R05C expectorants (excluding combinations with cough suppressants) are included, while other groups and combinations can help prevent deterioration and exacerbations in vulnerable patients.

What changed in the latest update of the Union list?

The network assessed 61 active substance groups and combinations and added 9 of these to the list.

EMA notes that EFA’s feedback on the importance of cefazolin, cefalexin, linezolid, fluconazole intravenous, voriconazole and aminophylline was shared with the Member States. Member States were asked to take the feedback into account and determine whether their original criticality assessment should be modified. Following that process, fluconazole intravenous was added to the Union list. No other changes were made to the Member States’ classification based on EFA’s remaining feedback.

The link to the Critical Medicines Act

The Union list is part of a broader EU approach to shortages, alongside wider legislative work to strengthen Europe’s supply security and manufacturing resilience. The proposed EU Critical Medicines Act is one key element of that package. In January 2026, European Parliament approved its position, opening the way for negotiations with Council of the European Union and the European Commission.

Next update of the list – notify your authorities!

In the first quarter of the year, EFA will work with its community of members to prepare input on the medicines that should be added or removed in the next review of the Union list due in December 2026.

EFA also encourages respiratory patients and patient groups to notify their national authorities of medicines to be prioritised by the EU in the next version of the list.

On 26 February, EFA President Marcia Podestà spoke at the European Parliament event ‘More than just skin: turning global commitments on skin diseases into EU and national action’, organised by the European Academy of Dermatology and Venerology (EADV) and co-hosted by MEPs Ewa Kopacz and Elzbieta Lukacijewska (EPP-Poland). 

Bringing together policymakers, patient leaders, doctors and scientists, the event aimed to address a key question: how can we harness the opportunity offered by the WHA resolution on skin health, ensuring prompt action at the EU and country level? 

Taking place only a few weeks after EFA’s Atopical Lives exhibition and #BreakTheInvisibleBurden campaign launch at the EP, the event confirmed the strong momentum around skin diseases within the political circles. 

‘We can’t treat just skin symptoms, our approach must be comprehensive and gender-based’  

MEP and Vice-President of the EP Ewa Kopacz noted the need for a reflection to make skin health a priority. The resolution’s call for better diagnosis, access to therapies, and integration into disability and mental health policies, offers a great starting point. From her side, MEP Lukacijewska underlined the burden of skin diseases, affecting physical and mental health, and quality of life as a whole. Both MEPs stressed that beating skin diseases needs a holistic and gender-based approach. 

DG SANTE’s Philippe Roux referred to the impact of skin diseases both on persons and systems. In the absence of an EU policy dedicated to skin health, Mr Roux highlighted key relevant EU initiatives, including the Beating Cancer Plan, the Code Against Cancer, and work on key co-morbidities such as the plans for mental and cardiovascular health. 

EADV President Dr Branka Marinovic stressed the importance of the WHA resolution as a process that opened the door of skin health into actual policy. She expressed the hope that events like this can help the dermatologists’ community achieve a key goal, which is better patient access to therapies. 

Patient representatives also took the floor, calling the EU to take the lead on skin diseases. GlobalSkin’s Jennifer Austin highlighted the importance of a WHO Global Action Plan, as a catalyst of country-level action and accountability. Furthermore, Dirk Provez shared his story of living with severe psoriasis, including his daily struggles and persistent social misconceptions about his disease, leading to stigma and isolation. 

Tackling the burden of atopic eczema in Europe: Time for patient-centred action 

Speaking from the perspective of people living with atopic eczema, the most common inflammatory skin condition, Marcia Podestà stressed the need to truly recognise the heavy, often invisible burden of atopic eczema. Triggering a holistic policy response means to address the mental and social impact of the disease, ensure fair access to multidisciplinary care, and tackle the financial burden associated with atopic eczema.   

To make this a reality, the EFA President proposed a set of concrete steps for EU policy:  

• Establishment of an EU Joint Action on AE 

• Integration of AE in the Healthier Together-EU Non-Communicable Diseases initiative post-2027 

• Integration of AE in the EU Cardiovascular and Mental Health Plans  

Finally, Marcia also referred to the WHA resolution and the upcoming Global Action Plan as historical events promising better visibility for skin health worldwide. She encouraged the whole skin health community to seize the momentum and collaborate to build on this unique opportunity, bringing tangible improvement for all patients living with skin conditions. 

The European Academy of Allergy and Clinical Immunology (EAACI) published guidelines on the importance of green space in urban environments for allergy and asthma prevention. The guidelines look at the evidence, including the rising burden of allergy and asthma epidemic in cities, and sets out eight recommendations. The focus is to encourage safer and more consistent exposure to “greenness” to support immune health and reduce risks linked to air pollution and heatwaves.

EFA was invited to contribute to the guidelines. We worked with our community to bring the perspective of allergy and asthma patients. EFA member organisations are acknowledged in the document for their contribution: the Organisation for Respiratory Health in Finland (Hengitysliitto), the Spanish Association for People with Food and Latex Allergy (AEPNAA), the Bosnian Association of Patients with Asthma, Allergies and Atopic Dermatitis (AAA) and Allergy UK. EFA Senior Policy Advisor Panagiotis Chaslaridis is also among the co-authors of the guidelines.

What is key in green spaces for EFA Community?

EFA supports the core direction of the guidelines. Green spaces can support prevention and can also help people already living with allergy and asthma. For this to work in real life, policy decisions need to make green spaces accessible, usable and safe.

A key point in EFA’s input is urban planning. As an overall goal for policymakers and urban planning, EFA suggested the 3-30-300 rule for urban forestry. This means people should be able to see at least three trees from their home, neighbourhood should aim for 30% tree canopy cover and residents should not live more than 300 metres from the nearest park or green space.

“More green” must also mean “safe green”

EFA also highlighted that “more green” must not create new barriers for people with allergies. The type of trees and plants chosen are important. Cities should prioritise non-allergenic species when possible, while taking local climate and context into account. Otherwise, allergenic pollen can make parks and green areas difficult to use for people with pollen allergy during the allergy season.

Sometimes, cities prioritise native tree species to support local biodiversity. However, some native species produce high levels of allergenic pollen, which can exacerbate conditions like asthma and allergic rhinitis. EFA therefore recommends balancing native planting with allergy concerns by selecting native species with low allergenic potential, avoiding single-species planting and using varied selection.

Where practicable, EFA also recommends practical avoidance/reduction measures, including wearing a mask, wrap-around sunglasses and a hat with a brim.

Beyond green spaces: soil sealing and indoor health risks

We noted that urban design choices go beyond trees and parks. Extensive soil sealing with asphalt and concrete increases flood risk and can contribute to damages in the buildings, excessive moisture and mould. Damp and mould are big triggers of respiratory symptoms and can increase health risks for people living with chronic respiratory diseases.

Finally, EFA pointed to schools and kindergartens as where prevention can start early. These are everyday environments for children and should be included in the green space planning. EFA also urged that curricula reflect the link between green space and health.

Read the full EAACI Guideline document here. EFA thanks all members that provided useful information and comments.

From January to June 2026, Cyprus holds the presidency of the Council of the European Union under the motto ‘An Autonomous Union. Open to the World’.

For people living with allergy, asthma, COPD and atopic eczema, this Presidency can support priorities that protect health and improve daily life across Europe. The programme is framed around strategic autonomy, competitiveness and social cohesion, and these connect directly to the policies that shape prevention, living conditions and health investment.

EFA will use this six-month window to bring patient priorities into the Council files where progress is possible. Below, we highlight where the Cyprus programme creates openings for health and the three policy asks EFA will promote during the Presidency.

What’s in the Cyprus programme and where it connects to health

The Cyprus programme emphasises the EU’s autonomy and readiness in a volatile context, alongside competitiveness and “not leaving anyone behind.” For EFA community of patients, three parts of the agenda stand out:

• The next long-term EU budget, which will determine whether health remains backed by adequate EU-level investment.
• Prevention policy, including how the EU’s cardiovascular agenda is implemented in a way that reflects real-life patient pathways.
• Housing policy, where affordability must go hand-in-hand with conditions that protect health.

EFA’s 3 key policy asks

Ensure investment in health in the negotiations on the next MFF (2028-2034): Currently the EU does not have sufficient funding for health, with health being predicted to lose its own dedicated budget. EFA asks Cyprus to keep health politically visible in Council budget discussions and support a strong, protected EU health envelope.

Make the Safe Hearts agenda work for patients with shared risk factors and comorbidities such as lung diseases. Following the adoption of the proposal for the EU Safe Hearts Plan in December 2025, Cyprus Presidency should work with national governments to promote cardiovascular programmes that take into account respiratory diseases, given the many shared risk factors and symptoms.

Put healthy housing as a top EU-level priority. The Commission presented its first-ever European Affordable Housing Plan in December 2025. For patients with allergy, asthma, COPD and atopic eczema, housing is not only a social issue, but can also be a direct driver of symptoms and flare-ups. We are calling on Cyprus to ensure that Council discussions on housing integrate health as a core outcome, alongside affordability, supply and pay special attention to indoor conditions that worsen chronic diseases.

EFA looks forward to the progress Cyprus will make in health and the environment. We are engaged with the Council’s work and look forward to building new networks and allies in our efforts to put lung and allergy health on the EU’s agenda, paving way for a European Lung Health Plan and EU-targeted action on atopic eczema.

The European Commission proposed a new set of plans labelled “Health Package” that might bring faster access to new therapies and medical devices for patients with allergies and airways diseases. The package includes three components:

• A plan to support biotechnologies (called the Biotech Act)
• New, simpler rules for medical devices (like inhalers, ventilators, nebulisers or auto-injectors)
• A “Safe Hearts Plan” to keep everyone’s hearts healthier

The Biotech Act: speeding up the availability of new therapies

Biotechnology^[1] can be the source of new treatments and therapies, more precise diagnoses and personalised medicines. However, the EU is lagging behind global competitors in this area. The new plan aims at helping scientists and companies create new treatments more easily through:

• increased funding,
• simplified regulations to fast track the availability of new treatments on the market,
• enhanced safe use of Artificial Intelligence and health data for the development of new therapies,
• and measures to protect against the misuse of biotechnologies.

For patients within our community, faster innovation and development of new therapies are of course important, but EFA highlighted that this must come with patient involvement from the early stages, better access to clinical trials and real access to treatments with timely availability across countries, and crucially, not compromising safety.

New rules for medical devices

When it comes to medical devices such as inhalers, ventilators, nebulisers or autoinjectors, current EU rules create unnecessary costs, bottlenecks and delays for patients. The new proposal includes a series of actions to reduce costs and delays. These include the simplification of rules so that medical devices can reach patients faster, the digitalisation of procedures and the monitoring of shortages of medical devices by the European Medicines Agency (EMA), with the creation of a list of critical devices.

Reduced delays in access to medical devices are important for our patients, but this shouldn’t be at the cost of safety. The balance between reducing costs and maintaining quality standards is not clear from the proposal, and patient oraganisations like us and our members can help. National Governments and the European Parliament need to ensure this is clarified in their response to the proposal.

Safe hearts plan: helping hearts stay healthy

Cardiovascular and respiratory diseases like COPD are closely linked and share risk factors such as tobacco, air pollution and respiratory infections. The new plan presents targeted measures to improve prevention, detection and treatment of cardiovascular diseases, including:

• Support to Member States in the development of national cardiovascular health plans to reduce health inequalities across countries.

• Stronger action against tobacco and smoking, with the goal of less than 5% of adults using tobacco by 2040.
• Reduce consumers’ use of ‘ultra-processed' foods, high in fat, sugar and salt,
• Protecting children from harmful advertising
• Promotion of regular physical activity
• Promotion of vaccination as a preventive measure for cardiovascular disease, including immunisation of high-risk and vulnerable groups against influenza, COVID-19, respiratory diseases and other infections.

While some important actions regarding respiratory health are included (action against tobacco and promotion of vaccination), some elements are missing, such as additional action on indoor and outdoor air pollution and the inclusion of respiratory diagnostic in primary care.

Next steps

The legislative proposals will now be submitted to the European Parliament and the Council for adoption and the work with Member States to implement the “Safe Hearts” plan will start. EFA will continue to ensure that the voice and needs of the allergy and respiratory patient community is reflected in these processes.

^[1] technology that utilises biological systems, living organisms or parts of this to develop or create different products

Last week, the EFA Atopic Eczema patient community brought the lived experience of atopic eczema patients to the European Parliament through an immersive photo and video exhibition. Hosted by MEP Laurent Castillo (EPP*, France), the Atopical Lives exhibition and a cross-party roundtable marked the launch of the European advocacy campaign #BreakTheInvisibleBurden, co-created by EFA and its members. The event gathered MEPs, healthcare professionals, patients, and patient organisations to underline a clear message: atopic eczema is not just a skin rash but a heavy, often invisible burden that demands a holistic policy response to improve access to care, disease management and quality of life.

An immersive exhibition revealing the invisible burden

MEP Castillo opened the exhibition by highlighting the social and financial burdens of atopic eczema and the importance of making patients’ hidden struggles visible. “Atopic Eczema is often there even when we don’t see it. It can cause isolation, bullying, anxiety, depression, poor sleep. It can also be very costly for the family. The photos we see today show the real impact of this pathology. Let’s make this disease visible.” He also pointed to the need for action following the WHA Resolution and stressed the EU’s role in including atopic eczema in its work on NCDs through education, awareness and best‑practice sharing.

EFA Treasurer, Simone Miles, emphasised the importance of integrating the lived patient experience into policy decisions and officially launched the #BreakTheInvisibleBurden campaign. She outlined its three core objectives: addressing mental and social burden, ensuring fair access to multidisciplinary care and treatment, and tackling financial pressures linked to the disease.

Healthcare professionals play a critical role, and EADV President, Prof. Branka Marinović, highlighted the importance of cooperation between dermatologists and patients to achieve meaningful policy change. She underlined the need to improve access to effective therapies, which often remain unevenly accessible across Europe, and called for the EU policymakers to recognise the momentum around skin diseases in public health.

Patients bring their reality to the European Parliament

The most emotional part of the event came when patients from across Europe shared their stories, guided by the exhibition photographer and curator, Lurdes R. Basolí.

Martina Piskar from Slovenia described the deep impact eczema had on her family and daily life: “Atopic eczema steals sleep, work, relationship and dignity”, calling for “A healthcare system that treats patients timely, holistically and compassionately, because when we only treat the skin, we lose the person.”

Hesna Beril Yazici, a young girl from Turkey, shared: “I learned about eczema before I learned to read and write.” She recounted isolation at school when classmates avoided touching her and expressed the relief of finally finding effective treatment.

Paco Rello Salcedo from Spain explained how eczema reshaped daily routines—showers became unbearable; he avoided mirrors and social contact. Now improved, he stressed the psychological toll and the importance of treatment access: “Even if it doesn’t kill you, it can still kill you psychologically, there are high rates of suicide. To avoid these all patients should have access to effective treatments.”

Olga Bekova from the Czech Republic recalled sleepless nights and despair when her son Theo was suffering, while reminding policymakers of the broader atopic journey: even when skin improves, asthma risks can follow.

Jana Zeizingerova, also from the Czech Republic, looked back on years of struggle: “I really want to forget these years because every morning I woke up and had to find the power to continue, both for me and for my children”, but added that treatment transformed her life: “I can sleep through the night and live with fewer fears.”

From France, Marjolaine Hering explained the disease’s influence on life choices and mental health, especially during adolescence. “Dancing was the space where I could breathe and feel myself again.” She emphasised the need for multidisciplinary care: “We need care, dermatologists, psychological care, and help to feel safe in our bodies.”

Testimonials and photos that aimed at showing, as Lurdes explained “the complexity of these lives, the burden, itching, pain, suffering, but also the life of these people in beauty with love, caring for their loved ones, it’s a proposal of getting closer to that universe… a path between burden, resilience, love, care, and touch”.

Turning the WHA resolution into action

The roundtable that followed brought together policymakers to discuss concrete EU actions to reduce the burdens highlighted in the exhibition.

Dr Kingsley Asiedu outlined WHO’s work after the adoption of the landmark WHA resolution on skin diseases as a global public health priority back in May 2025, and laid out ongoing move towards a global action plan, involving a public consultation and extensive collaboration with stakeholders and Member States. He stressed how the resolution will improve data availability through required country reporting on skin diseases.

The roundtable started with a discussion on the current challenges linked to atopic eczema. MEP Castillo cited the mental health impact, the need for treatment access—especially as new effective therapies remain costly—and the importance of research investment.

MEP Tilly Metz (Greens, Luxembourg) added concerns about bullying, stigma, and social exclusion, and highlighted low disease awareness as a major barrier. Finally, MEP Aurelijus Veryga (ECR, Lithuania) shared examples of childhood stigma, noting that many children avoid touching peers with atopic eczema, reinforcing isolation. He emphasised the need for education against stigma and acknowledged the high financial burden of clothing, daily care and medicines.

Regarding next steps, the speakers focused on concrete actions to address the atopic eczema burden. From his side, MEP Castillo pointed to the upcoming EU cardiovascular and mental health plans as opportunities to include atopic eczema and mentioned the importance of the Critical Medicines Act and further funding of research.

MEP Metz underlined giving patients a voice, improving equity, involvement in data collection and research, and using EU tools for NCDs, while she agreed with the need to make EU NCD frameworks fit for AE, starting with the next EU NCD. She also noted the need to improve air quality and implement climate mitigation measures that can benefit atopic eczema patients.

MEP Veryga emphasised digital health solutions, deeper scientific research, better education for healthcare professionals—especially regarding mental health impacts—and tackling unequal access to medicines.

A shared journey ahead

The event marks the beginning of a joint effort within the atopic eczema community to bring patient needs to policymakers at national and EU levels. EFA will continue working with members to advocate for earlier diagnosis, improved treatment access and better quality of life for patients.

EFA extends heartfelt thanks to all members and patients who travelled to Brussels to share their voices. Their presence and testimonials delivered a strong message about the reality of living with atopic eczema and the urgency of concrete policy action.

*Following the week of the exhibition, MEP Castillo was reported to have left the EPP group

EFA extends our sincere thanks to our sustainable corporate partners Sanofi-Regeneron Alliance, Almirall, Pfizer and Incyte for their support through unrestricted grants for our Atopic Eczema Skin Matters project.

The 5th EU Clean Air Forum in Bonn brought together policymakers, scientists and civil society to discuss air quality in Europe. EFA represented people living with allergy, asthma and COPD and highlighted that recent progress in EU air quality law will only matter if it is implemented fully and on time. We worked alongside the EU Healthy Air Coalition (EUHAC), where EFA is a founding member, to bring patient evidence and priorities into EU air and climate policy debates.

The discussions in Bonn were framed by new European Environment Agency data showing that air pollution is still responsible for about 280,000 preventable deaths every year in Europe. EFA data and experience also point to a persistent burden in terms of asthma and COPD exacerbations, hospital visits and reduced quality of life linked to poor air quality. (EFA Raising the bar for better standards of care for Chronic Obstructive Pulmonary Disease Report, 2024)

Against this evidence, Commissioner Jessica Roswall said that EU efforts on clean air need to intensify. In parallel, EEA Executive Director Leena Ylä-Mononen highlighted that vulnerable groups must be the focus of future action. For the EFA patient community, this includes people whose lung health is already compromised and who experience more symptoms, more frequent medical care and higher costs when air quality is poor.

From EU law to national implementation

The revised Ambient Air Quality Directive, agreed in 2024, marked an important step for cleaner air and public health in Europe. While not fully aligning with the latest WHO recommendations, the revised AAQD, lowers limit values for major pollutants, introduces regular legislative reviews and strengthens people’s rights to clear information, justice and compensation when air is illegally polluted. EFA contributed to this revision as a stakeholder, recognising air pollution as a major risk factor for allergy and respiratory disease. Its real impact will depend on how far Member States turn it into concrete national measures that reduce exposure to harmful pollutants.

The Bonn Forum showed that the NECD remains a crucial part of this work. On the second day, the European Commission announced the results of the evaluation of NECD, which shows ‘good progress’ but also room for improvement in terms of the implementation of the Directive, particularly in sectors where progress has been slow: agriculture, domestic heating and transport. Through EUHAC, EFA has called on the Commission to speed up binding emission reductions to 2030 and beyond, include targets for pollutants such as methane, and phase out subsidies that lock in fossil fuels, biomass burning and ammonia-intensive practices, redirecting support towards pollution prevention.

Innovation and monitoring that work for patients

Innovation was a strong focus in Bonn. The first day explored how AI, machine learning and new monitoring tools can support cleaner air. EFA’s representative, Panagiotis Chaslaridis, pointed to a major gap: the absence of real-time pollen monitoring across Europe. Pollen is a natural pollutant, worsened by human-driven activities. Yet, for millions of people with seasonal allergy, it is a powerful trigger for symptoms, missed work or school and, for some, severe asthma attacks. Integrating pollen into routine air quality monitoring and alerts would give patients practical information so they can plan their day, adjust treatment with their healthcare professional and reduce exposure.

Climate, air quality and lung health

Speakers also discussed how climate and air quality policies are closely linked. Cutting emissions that drive climate change, including from biomass burning and other high-polluting fuels, can at the same time improve the air people breathe both indoors and outdoors. For EFA, climate measures on heating, mobility and food systems should be judged not only on their climate impact, but also on how much they reduce pollutants that harm lung health.

Communication on air pollution

Finally, the Forum confirmed that communication is central to effective air quality policy. HEAL’s Anne Stauffer reminded participants that people need clear, local and relevant information to understand risks and act on them. EFA has consistently argued that access to healthy air and to understandable, health-focused and real-time air quality information are fundamental rights. For people with allergy, asthma and COPD, indices and alerts should spell out what the situation means for their condition and what concrete steps they can take that day.

Following the 5th EU Clean Air Forum, EFA and EUHAC will continue to work so that EU air quality laws are implemented as they were intended: reducing pollution at the source, aligning standards with scientific evidence and putting the vulnerable communities at the centre. Since last year, the EU has put a stronger legal framework in place. The next phase must ensure that people living with allergy, asthma and COPD feel the difference in their daily lives through cleaner air, fewer exacerbations and better protection of their lung health.

On Tuesday 4 November, the European Federation of Allergy and Airways Diseases Patients’ Association (EFA) participated in an European Medicines Agency (EMA) online public webinar on medicine shortages and was represented by EFA President, Marcia Podestá. There is clearly work to be done – a 2024 PGEU survey found that 100% of European countries (28) experienced medicines shortages in the last 12 months. The message is clear: involve patients in decisions early, to make transparent, efficient regulatory decisions.

Webinar summary

Medicine supply chains are very complicated; this makes them vulnerable and, if not managed well, can lead to shortages of life saving treatments. During the webinar, patients, consumers and healthcare professionals were invited to speak on the question: What can patients and healthcare professionals do to prevent and manage shortages?

In her intervention, Marcia presented EFA’s work on shortages, including the groups we are involved in (e.g. EMA PCWP) and the current shortages in EFA’s disease areas:

• Salbutamol: Used to treat asthma, chronic obstructive pulmonary disease (COPD) and similar conditions. Under an EMA shortage mandate due to increased demand, manufacturing falling behind.
  • EFA action: contacted manufacturers and reviewed EMA public information on shortages.
• Syringe adrenaline auto-injectors (AAI): AAIs are a lifesaving treatment used to treat serious allergic reactions (anaphylaxis) in an emergency. The shortages are driven by a technology transfer delay.
  • EFA action: Communication with Italian Medicines Agency, dialogue within EFA and other patient associations and communication of shortage to EMA.

These two examples were followed by six key actions that patients can take to manage and prevent medicine shortages. Read them here.

Webinar takeaways

1. Medicine shortages affect all players in the healthcare system: Medicine shortages affect patients, healthcare professionals, pharmacists, manufacturers, regulators, we need a holistic approach which addresses the interconnectivity between them.
2. Causes of shortages are complex: Roots of causes can be due to geopolitical factors, natural disasters, public health emergencies, societal factors, manufacturing factors, and economic and social factors.
3. Managing shortages is a collective effort: Patients, European Commission, EMA, national authorities, healthcare professionals, manufacturers are all involved, but the key part is engaging patients with national authorities. They can provide guidance, feedback and recommendations to national authorities.
4. European shortages measures are working: EMA has worked on measures which prevent shortages, rather than only limit the impact of shortages. For example, amoxicillin which was recently resolved.
5. Patients should be involved from the start: Patients and patient organisations should be supported in engaging with national authorities and ministries and EMA to report on shortages. They are the ones experiencing them and are central to alerting authorities.

Next steps

This is the first time EMA organised a public webinar on the topic. EFA will continue to be working closely on medicine shortages, through our work in EMA’s PCWP, EPF’s Task Force of Shortages, the Critical Medicines Alliance and HERA’s Civil Society Forum, as well as upcoming legislative work.

EFA thanks EMA for inviting us to the debate. A special thank you goes to the EMA and European Commission colleagues who also participated in the webinar:

• Melanie Carr, Head of Stakeholders and Communication Division
• Juan Garcia, Head of Public and Stakeholder Engagement
• Laure Geslin, Team Leader at DG SANTE
• Emmanuel Cormier, Head of Regulatory Science and Innovation
• Monica Dias, Head of Availability and Supply of Medicines and Devices
• Inga Abed, Public and Stakeholders Engagement Department

Find more information on the webinar here.

Read EFA’s position on the EU’s Critical Medicines Act here.

On 7 November 2025, the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) sent its feedback to the European Commission’s public consultation on the new EU Biotech Act. The law is part of the Commission’s broader Strategy for Life Sciences and aims to boost biotechnology and biomanufacturing in Europe. For people with asthma, allergy, COPD and atopic eczema the point is practical: faster diagnosis, safe treatments that work and equal access across countries.

EFA welcomes the European Commission’s proposal for a European Biotech Act. Clearer, faster pathways from discovery to delivery can support European competitiveness and improve health outcomes also provided that safety, transparency and equity remain central. In an earlier input to the Strategy for European Life Sciences, EFA called for a health-in-all-policies approach, especially in research. Those principles should carry through to this Act so that scientific progress reaches people in clinics, not only in journals.

EFA’s response to the consultation on the EU Biotech Act

Our response focuses on three areas: access to biotechnologies, investment in research and innovation of biotechnologies for food allergy, atopic eczema and respiratory diseases, and prevention of diseases and climate hazards through biotechnologies. We ask the Commission to recognise patient organisations as partners throughout design, evaluation and roll-out.

Access

Biologics developed through biotechnology are transforming care for allergic and respiratory diseases like asthma, COPD, and food allergies. These innovations enable personalised treatments and better diagnostics, but many patients still face barriers due to high costs, slow approvals, and unequal access. The EU Biotech Act must prioritise fair pricing, faster regulatory pathways, and support for research, especially for conditions with unmet needs, to ensure all patients benefit from these life-saving therapies.

Investment

To ensure patients benefit from biotechnology innovation, the EU must prioritise funding, research, and education. A supportive regulatory framework drives investment and progress, yet current underfunding of health programmes and basic research threatens advancement in allergy and respiratory care. The EU Biotech Act should promote patient-centred co-design, strengthen scientific education, and tackle misinformation to build a skilled, informed, and inclusive biotech ecosystem across Europe.

Prevention

Biotechnologies play a vital role in preventing allergic and respiratory diseases and managing health risks linked to climate change. From early diagnostics and personalised therapies to climate-resilient healthcare solutions, biotech innovations can reduce hospitalisations and improve patient outcomes. The EU Biotech Act should recognise the impact of environmental factors on health and support biotech-driven prevention strategies, climate-adapted care, and resilient supply chains.

Next steps for the EU Biotech Act

The Commission will review stakeholder input and publish the legislation in two steps: European Biotech Act I at the end of 2025, followed by European Biotech Act II in Q3 2026. EFA will continue engaging with DG SANTE and partners to ensure the final package delivers where it matters: safe, timely, and equitable access to innovation.

We thank EFA members for their valuable contributions to this consultation:

• Marcia Podesta, Food Allergy Italia
• Fríða Rún Þórðardóttir, Astma og ofnæmisfélag Íslands (AO)
• Gundula Koblmiller, Österreichische Lungenunion
• Anna Sobocińska, Polska Federacja Stowarzyszeń Chorych na Astmę i Choroby Alergiczne i Przewlekłe Obturacyjne Choroby Płuc
• Vildana Mujkic - AAA Bosnia and Herzegovina
• Juan Fuertes, Federación Española de Asociaciones de Pacientes Alérgicos y con Enfermedades Respiratorias (FENEAR)
• Georg Kneer, Deutsche Allergie- und Asthmabund (DAAB)
• Erika Colen, Astma en Allergie Koepel

Read EFA’s response to the consultation here

Read EFA’s response to the EU’s Strategy for Life Sciences here

The first training session of the European Respiratory Patient Academy brought together 42 patient advocates from 23 countries for four days in Prague earlier this month. Trainees learned side by side as a community, sharing experiences, supporting each other and working together for better respiratory health across Europe. Read the full report of the first training. 

 
Inside the Academy: what trainees learned in 4 days

Training began with clear lessons on prevention and campaigning. Károly Illy, EFA Vice President, shared Longfonds’ (Netherlands) experience with the Healthy Air Agreement and the Smoke-Free Generation. He explained how coalitions move governments and shared responsibility keeps the momentum for positive change. Real policy impact is possible when facts, personal stories and alliances work together.

We then tackled stigma with Inez de Kruijf-Carter (KNCV TB Plus), where the group looked at how stigma around respiratory disease layers and intersects with daily life. The exercise asked us to frame a patient case in a way that excludes and then analyse the impact. We reworked the same case with inclusive language and discussed practical changes systems could make to support patients.

Scientific literacy for evidence-based advocacy was another big topic of the training programme. With Prof. Anne-Marie Russell (University of Birmingham) and Liam Galvin (EU-IPFF), we practiced reading scientific papers, retrieving data, evaluating methodologies, checking reliability and validity of results. We talked about how to use numbers carefully in policy asks, funding discussions, and clinical conversations, without losing the patient story.

Understanding healthcare systems sat alongside the science. With Salvatore Pirri (Regulatory Pharma Net), participants mapped how healthcare works, who shapes access and why value matters alongside with price in real decisions. The focus was on where patient advocacy can bring evidence and lived experience into those discussions.

Advocacy essentials and patients in research rounded out the picture with Alfonso Augoron from Patvocates. Sessions covered what effective advocacy looks like, how to set clear goals and build coalitions, and how communities can help shape research from the start through skills, confidence, and meaningful engagement.

Leadership and communication tied the learning together. With Jan Geissler (Patvocates) and Sarah Geraghty (The Communications Clinic), the room worked on setting goals, speaking with clarity, building alliances and sustaining organisations. The emphasis was on being strategic rather than only tactical, on grounding advocacy in evidence and using communication to build strong cases that strengthen patient advocates’ voice.

EFA President Marcia Podestà also led a governance session on the essentials of building strong patient organisations: transparency, clear processes, accountability and long-term sustainability. The emphasis was on being strategic rather than only tactical, on grounding advocacy in evidence and on using communication to build strong cases that strengthen patient advocates’ voice.

Every day, trainees led breathing exercises for a pause and a shared focus. After each session, we broke into teams to put skills into practice: setting clear goals, shaping messages, mapping stakeholders, testing evidence and drafting plans to take home. Teams presented, challenged each other’s ideas and adapted them to national contexts.

Working as one respiratory community

What stood out was how quickly the room began to work as one. Trainess compared realities across countries. They tested ideas side by side. They turned lived experience into plans they could take home. This is the point of the project: a stronger, connected respiratory patient community that can act together across diseases and borders for greater prioritisation for lung health and respiratory disease.

Each day closed with a short wrap-up from Steering Committee leads. They collected the day’s key words and takeaways: what was learned, what would support national work and what needed a second look. That rhythm of learning, practicing, and collecting reflections kept the programme anchored in real-world advocacy.

The training was opened and closed by the Steering Committee Chair, Marcia Podestà, who set the work in the context of implementing the WHA Resolution on Integrated Lung Care and Europe’s shared goal to #KeepBreathing.

Thank you to our amazing trainees, the Steering Committee members and our 8 corporate partners for their support in shaping this journey to better respiratory care in Europe!

From left to right: Debra Montague (Lung Cancer Europe), Paul Sommerfeld (TB Europe Coalition), Hall Skaara (PHAEUROPE), Marcia Podesta (EFA), Frank Willersin (Alpha-1 Europe Alliance) 

From left to right: Susanna Palkonen (EFA Director), Daniele Pesaresi (Chiesi), Mary Ruth Brehmer (Sanofi-Regeneron Alliance), Andrea Forgione, HSBA (Menarini Group), Gaëlle Tournade (GSK), Aurore SERRAL, PhD (OM Pharma), Susanne Brandl (Roche), Rose Brade (AstraZeneca), Marcia Podesta (EFA President), Liina Haldna (MSD)

With full hearts, we closed the first training session of the European Respiratory Patient Academy as a stronger community. Over four days, we learned as much from one another as from the programme. We strengthened our advocacy, leadership and communication skills. We also practiced using evidence and engaging stakeholders while keeping the respiratory patient voice front and centre. Survey feedback showed real knowledge gains and practical tools for national work. As our President Marcia Podestà reminded us, this is what a united respiratory patient movement in Europe can look like.

Read the full report of the first training. 

EFA sincerely thanks our Sustainable Corporate Partners for their support for this project: AstraZeneca, GSK, Sanofi-Regeneron Alliance, OM Pharma, Chiesi Group, Boehringer Ingelheim, MSD Roche, Menarini Group

Copenhagen hosted the 75th session of the WHO Regional Committee for Europe (RC75), where governments, WHO officials and civil-society organisations reviewed progress and set new directions for the region’s health agenda. The discussions spanned noncommunicable diseases, preparedness, ageing and child health. For EFA, it was an opportunity to ensure that the needs of people living with allergy, asthma, COPD and atopic eczema were reflected in these emerging strategies.

EFA was represented by our President Marcia Podestà and Senior Policy Advisor Panagiotis Chaslaridis, who followed the negotiations closely and engaged directly with Member States. We addressed the committee during the debate on the new WHO Regional Strategy for Child and Adolescent Health 2026–2030. This is a key framework for shaping national policies affecting Europe’s youngest populations.

EFA President Marcia Podestà delivering the statement

EFA’s intervention on child and adolescent health

Taking the floor in the plenary, Marcia urged countries to integrate the recently adopted World Health Assembly resolutions on lung health and skin diseases into the Strategy from the outset. She underlined that asthma and atopic eczema are among the most common chronic conditions beginning in childhood and often persist into adulthood, accompanied by a range of co-morbidities.

Marcia also highlighted that the burden of these diseases is not limited to clinical symptoms. They influence how children learn, participate and develop socially, and they often lead to school absenteeism, anxiety and reduced confidence. These daily realities can shape a child’s trajectory long before adulthood.

EFA called on governments to address the factors that drive and exacerbate these conditions: commercial determinants such as tobacco and novel nicotine products that target young people, indoor and outdoor air pollution in homes, schools and cities, and uneven access to early diagnosis and coordinated care. The intervention also called for recognising the emotional and social impact on families and for giving young people a say in their care, using digital tools where helpful.

The statement, co-signed with nine partner organisations, was one of the most unified civil-society interventions at RC75, supported by partner organisations from hospital managers, primary care, public health and respiratory professionals. The Strategy for Child and Adolescent Health was adopted shortly afterwards. This is an important achievement that will now require sustained implementation at national level.

EFA delegation at WHORC 75

A wider agenda: European Programme of Work and Ageing

The child health debate took place alongside discussions on the Second European Programme of Work 2026–2030 (EPW2), the framework that will guide WHO/Europe’s priorities for the coming years. EPW2 places renewed emphasis on noncommunicable diseases, climate and environmental health and preparedness for future health threats. These themes align closely with EFA’s long-standing advocacy for prevention, clean air and stronger responses to environmental determinants of respiratory and allergic disease.

WHO/Europe also introduced components of its forthcoming “Ageing is Living” Strategy 2026–2030, which will focus on prevention, innovation and age-friendly systems. For EFA, this direction reflects findings from its recent COPD report, which highlights the barriers older adults face in accessing timely diagnosis and appropriate care. Building on the WHA Lung Health Resolution, our joint #KeepBreathing initiative, in collaboration with nine European partner organisations, aims to translate these COPD and ageing priorities into a stronger EU lung health policy and, ultimately, a future European Lung Health Plan. Both the EU and WHO Europe must play a leading role. Together with the child health strategy, it forms part of a broader life-course approach that recognises lung and skin health as central to wellbeing at every age.

EFA President Marcia Podestà and Hans Kluge, Regional Director for WHO Europe

Civil society and the implementation test

Throughout RC75, EFA met with Member States, WHO officials and fellow non-state actors to discuss how regional priorities can translate into practical improvements for patients. A dedicated session on civil-society engagement signalled WHO/Europe’s intention to work more systematically with organisations that represent lived experience. This is important because policies designed without patient involvement often fail to address the realities people face.

As the meeting closed, the commitments set out in Copenhagen offered a clear sense of direction for the years ahead. The real test will lie in implementation. For EFA, the week marked a meaningful step in ensuring that lung and skin health feature prominently in Europe’s evolving health agenda. The task now is to support our members in their home countries in turning these strategies into changes that improve prevention, care and quality of life for all to #KeepBreathing and live healthier lives.

Read EFA's joint statement on child and adolescent Health with nine organisations here. 

Medical devices are essential in allergy and respiratory care. For people with allergy, asthma and COPD, this means tools such as inhalers and spacers, nebulisers, oxygen equipment, allergy test kits, autoinjectors and digital monitors that support diagnosis, treatment and prevention.

EFA has submitted a response, developed with our patient community, to the European Commission’s call for evidence on the targeted revision of the EU Regulations on medical devices (MDR) and in vitro diagnostics (IVDR). The submission explains what the reform should deliver: safe devices, clear rules and reliable access across countries.

Medical devices are important to allergy and respiratory patients

EFA has engaged in the Medical Device Regulation process since 2012. The European Commission is reviewing how the MDR and IVDR work in practice, while the EU Health Technology Assessment Regulation became applicable in early 2025 and will begin joint EU assessments of selected high-risk devices in 2026. In March 2025, EFA responded to the Commission’s evaluation and highlighted problems in the legal framework, stressing that any simplification of development, assessment, authorisation and surveillance must not weaken patient safety.

MDR, IVDR and HTAR (Health Technology Assessment Regulation) should align on evidence and timelines to keep protection high and access reliable. This consultation is a key opportunity to embed the patient voice at the heart of implementation. Drawing on our community’s input, we set out four recommendations.

EFA recommendations for a safe and patient-proof MDR

Medical device regulatory procedure: EFA welcomes efforts to simplify EU medical device regulations but regrets the lack of a full impact assessment of the revision. The current fragmented system risks patient safety and limits patient involvement. EFA calls for a centralised EU procedure for high-risk devices, stronger patient representation in regulatory bodies, and specialised notified bodies to ensure consistent, high-quality assessments and equal access across Europe.

Access to care: Medical device shortages in Europe severely impact allergy and respiratory patients’ mental health, causing anxiety, depression and isolation. EFA urges a centralised EU procedure for high-risk devices to ensure safety and equal access. Fragmented national systems delay care and exclude patient voices. Involving patients in regulatory bodies and creating specialised notified bodies can improve safety and reduce psychological distress.

Prevention of respiratory diseases: The MDR supports respiratory disease management by ensuring device safety through rigorous evaluation and surveillance. For allergy and airways diseases patients, reliable devices are vital. EFA stresses that streamlining must not weaken safety standards. A key gap is patient education. Ongoing training is essential but often lacking.

Investing in healthcare systems and innovation: EU-made medical devices are globally valued for their high standards, a key competitive advantage. While streamlining MDR reduces burdens and speeds market access, patient safety must remain paramount. MDR enables innovation, like AI respiratory tools, improving care for asthma and COPD. EFA urges highlighting these benefits and stresses that Member States' actions support, not hinder, EU-wide goals for better device regulation.

Next steps

After reviewing the comments from the stakeholder community, DG SANTE is set to publish the legislative revision by the end of the year.  EFA looks forward to seeing the final legislative proposal and urges the Commission to consider our demand that medical devices are safe, patients are involved, and MDR and HTAR align to deliver timely, reliable access to medical devices across Europe.

Thank you to the EFA community members Federación Española de Asociaciones de pacientes alérgicos y con Enfermedades Respiratorias, FENAER (Spain) and Longfonds (The Netherlads) whose contributions shaped this response.

Read EFA’s full response to the consultation here: https://lnkd.in/ejTSPMfv

In October, EFA responded to the European Commission’s public consultation on a European Affordable Housing Plan. The response brought the perspective of people living with allergy, asthma and COPD to a debate that is often framed around affordability and supply, but that also has clear implications for health.

Housing conditions directly affect indoor air quality (IAQ) and respiratory health. Factors such as heating systems, ventilation, insulation, building materials and air-conditioning play an important role in exposure to indoor pollutants. Poor indoor air can worsen symptoms, trigger exacerbations and increase healthcare needs for people with chronic respiratory and allergic conditions.

Making health a core element of housing policy

EFA called on the Commission to make health a central component of housing policy, including in social and affordable housing schemes. This means supporting funding for health-based renovations, ensuring well-functioning heating, ventilation and air-conditioning systems, and improving access to information on health aspects of housing, including indoor air quality.

Investments that improve indoor environments can deliver health benefits while also supporting energy efficiency and climate objectives. However, without a clear health focus, housing initiatives risk missing these opportunities.

Addressing gaps in knowledge and awareness

EFA also highlighted the need to address gaps in knowledge about the health impact of housing, particularly for high-risk populations. National awareness campaigns and education programmes on healthy housing are needed, alongside stronger involvement of local actors such as patient organisations, health services, schools and public authorities.

These actors are well placed to support prevention, raise awareness and help translate policy objectives into practical action at local level.

Ensuring inclusive innovation on indoor air quality

Innovation in indoor air quality technologies is developing rapidly. EFA welcomed this progress, while stressing that new solutions must be accessible and inclusive. The voices of people most affected by poor indoor air should be integrated from the research stage, and access to IAQ innovations should not be limited by cost or availability.

Learning from existing good practices

Finally, EFA called for stronger cross-sectoral dialogue involving all relevant stakeholders, including patients. Coordinated approaches already exist at national and regional level and can provide useful lessons. Examples include Finland’s Indoor Air and Health Programme, Catalonia’s Inter-Ministerial Public Health Plan, Poland’s programme to replace old heating equipment, and Sarajevo Canton’s long-term strategy to reduce household heating emissions.

The European Affordable Housing Plan is expected in early 2026. EFA will continue engaging to ensure that healthy housing and indoor air quality are properly reflected in future initiatives.

EFA thanks its members the Austrian Lung Union, AAA Bosnia and Herzegovina, the Finnish Organisation for Respiratory Health, the Polish Federation of Asthma, Allergy and COPD Patients’ Organisations, the Slovenian Atopic Dermatitis Association, the Spanish Federation of Respiratory Diseases’ Associations, and the Spanish Association for People with Food and Latex Allergy for their valuable input to this response, provided through an online workshop and written contributions.

Read EFA’s full response to the consultation.

The Lung Health 4 Life (LH4L) consortium held its second annual meeting during the ERS Congress 2025 in Amsterdam. LH4L is an EU4Health project with a school programme that pairs simple lung function checks with age-appropriate lessons on breathing, air quality and prevention to spot problems early, build health literacy and ensure timely care from childhood.

The meeting brought together consortium partners, members of the External Advisory Board, Community of Practice (CoP) participants and representatives of the European Commission to review progress and agree on the implementation plan. Coordinated by EFA, the CoP serves as the hub that connects teachers, patient organisations, clinicians, researchers and public authorities to share evidence, align on best practices, support schools and co-create tools that fit real classrooms across countries.

CoP representatives at the #LH4L AGM 2025 

Why schools are the right place for lung health

Children spend a large part of their day in education. By working in schools, LH4L reaches children where learning happens and turns prevention into routine. Lung function testing can flag concerns before the first symptoms. Health education also helps children understand their lungs and the factors that affect breathing, including air quality and physical activity.

The classroom package combines practical checks with clear, age-appropriate content. Over the past months, the CoP shared existing educational materials for adaptation and reviewed the intervention protocol and its annexes through three formal consultations. This work ensured that content is accurate, usable and culturally relevant in different national contexts.

Implementation moves to three European countries

The implementation will start in Hungary, Poland and Portugal. The Polish action is led by EFA member, Polish Federation of Allergy, Asthma and COPD Patients. Schools will introduce lung function testing and health education side by side and evaluate effectiveness using clear measures. These include improved knowledge, earlier identification of issues and smoother links to care when needed. The CoP will support delivery across sites by sharing clear guidance on what to do next and keep teachers, clinicians and patient groups working together.

Session on CoP and project sustainability

At the ERS Congress, EFA was invited to present  on how the Community of Practice (CoP) drives project sustainability. The CoP regularly comes together to share knowledge, build skills and address challenges. This teamwork creates tools that work in classrooms and keeps results useful and easy to update after funding ends. It serves as a model for other EU projects.

What happens next

The CoP will identify and map best practices in lung health promotion and disease prevention for young people. Findings will inform methods that can be replicated and scaled across Europe. EFA will continue to lead the CoP and ensure that the patient perspective guides decisions from design to classroom use.

EFA thanks the Community of Practice participants, consortium partners and External Advisory Board members for their contributions in shaping a practical and sustainable programme for children’s lung health across Europe.

EFA brought lung health to the 2025 European Health Forum Gastein agenda with a high-level session on the future of European lung policy, calling for stronger prevention, earlier diagnosis and better care across Europe. Participants also had the chance to visit our #KeepBreathing spirometry booth and test their lung function, putting prevention into practice and raising awareness about respiratory health. Read the full event report. 

High-level policy debate on lung health, care and prevention

Our session “Breathing Together for Change”, led on behalf of the European Lung Health Group (ELHG) and part of the #KeepBreathing campaign, brought together policymakers, researchers, patient representatives and civil society organisations to discuss how Europe can better address the burden of respiratory diseases.

Speakers underlined the scale of the challenge: over 82 million Europeans live with a chronic respiratory condition, costing society an estimated €1.4 trillion each year. They called for coordinated policies that prioritise prevention, early detection and support for patients across the care pathway.

“Now is the time for strong, coordinated public health action on improved diagnostics, primary care capacity and clean air policies to reduce preventable suffering and build resilient health systems,” said José Luis Castro, WHO Special Envoy for Chronic Respiratory Diseases.

“Eighty million patients also mean millions of families who become carers and communities bearing the impact,” noted Susanna Palkonen, EFA Director. “Early diagnosis must be the absolute priority, yet simple lung tests are still not integrated into broader health strategies.”

Speakers pointed to the need for political commitment to turn good practices into systemic change. “Belgium’s move to smoke-free terraces is good practice, but isolated wins aren’t enough. We need political will, and we need to work together for actual change through European legislation,” said Cornel Radu-Loghin, Secretary General of the European Network for Smoking and Tobacco Prevention (ENSP).

From left to right: José Luis Castro (WHO), Susanna Palkonen (EFA), Cornel Radu-Loghin (ENSP)

The importance of evidence-based policymaking was another important message. “Evidence must drive policy, but politics too often focuses on one issue at a time,” added Thomas Allvin, Executive Director of Strategy and Healthcare Systems at EFPIA (European Federation of Pharmaceutical Industries). “Strengthening awareness, investment, and the social contract between industry and patients will improve health and care for all.”

Speakers also highlighted the complexity of chronic disease and the need for integrated approaches. “Respiratory diseases rarely come alone, as comorbidities like cardiovascular disease worsen outcomes,” said Zsuzsanna Miklós, Senior Policy Adviser at JARED. “Tackling inequalities, supporting early diagnosis and empowering patients to self-manage are essential steps forward. These are tasks included in the JARED, EU Joint Action of Respiratory Diseases, which can pave the way for a future European Lung Health Plan”

From left to right: Thomas Allvin (EFPIA), Zsuzsanna Miklós (JARED), Susanna Palkonen (EFA), Corden Radu-Loghin (ENSP)

Prevention in action: lung testing on site

Alongside the policy debate, EFA and the European Lung Health Group brought prevention directly to EHFG participants through a free spirometry booth, run with Gundula Koblmiller from Lungenunion (EFA’s Austrian member) and Sven Verschraegen from the University Hospital Ghent.

Gundula Koblmiller (Lungenunion) and Sven Verschraegen (University Hospital Ghent)

Over two days, 130 participants tested their lung function, many for the first time, showing how simple, non-invasive screening can raise awareness and detect potential risks early. Spirometry remains one of the most effective yet underused tools in respiratory medicine and including it in regular health checks for people at risk could significantly improve outcomes.

Linking heart and lung health

EFA Director, Susanna Palkonen also spoke in a high-level panel on cardiovascular disease, part of the EU’s work on a forthcoming Cardiovascular Health Plan. In an “elevator pitch” to European Commissioner for Health Olivér Várhelyi, speakers outlined their key priorities for the plan.

Susanna emphasised the close link between lung and heart health. “Lung health greatly contributes to cardiovascular outcomes. Poor lung function, for example, in COPD can trigger cardiovascular emergencies. Including spirometry in systematic health checks for people at risk and regulating tobacco use, particularly vaping among young people, are essential steps we must take,” she said.

Commissioner Olivér Várhelyi underlined the urgency of addressing preventable risk factors. “Most of the cardiovascular burden is preventable and has nothing to do with genetics — it is about risks we face in daily life,” he said. “We know what must be changed for healthier generations, so let’s change it.”

A shared agenda for prevention and care

Our activities at EHFG 2025 showed that respiratory health must be integrated into Europe’s wider public health strategy through a dedicated Action Plan to implement the World Health Assembly (WHA) Resolution on Integrated Lung Health. Prevention, early diagnosis, tobacco regulation and equitable access to care are all essential to tackling the burden of chronic disease and to building resilient, patient-centred health systems.

Together with partners across the respiratory community, EFA will continue working to ensure that every person in Europe can #KeepBreathing. Read the full event report.