EFA

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.

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. 

The European Respiratory Society (ERS) Congress 2025 in Amsterdam brought together researchers, healthcare professionals and patient representatives to work towards better prevention, care and treatment for people with respiratory diseases. Throughout the week, discussions focused on how science, policy and patient experience can come together to improve lung health across Europe. EFA joined the conference in person and has collected key highlights from a busy week.

Collaboration and learning at the GAAPP Summit

Right before the start of the Congress, EFA took part in the GAAPP Summit 2025, where patient organisations came together to share experiences and strengthen collaboration. EFA’s Community Manager Suzanne Bocoum presented our respiratory projects – COPD Beyond Care, the European Respiratory Academy and the European Lung Health Group, showing how these initiatives aim to improve patients’ lives through advocacy, education and shared expertise.

Suzanne Bocoum (EFA Community Engagement Manager) and Tonya Winders (CEO of GAAPP)

Patient organisations share their expertise

The Congress opened with the European Lung Foundation (ELF) Patient Organisation Day, showcasing how patient experts contribute to healthcare and policy discussions. Representatives from across Europe and beyond shared their work to support people with respiratory conditions and advocate for stronger prevention and care.

EFA Members at ELF Patient Organisation Day 2025 (ERS Congress, Amsterdam)

Sessions focused on lung health priorities such as early detection, prevention and the impact of climate change. During a workshop, participants discussed how the new World Health Organization (WHO) Resolution on Chronic Respiratory Diseases could help strengthen advocacy at national and regional levels. WHO Special Envoy José Luis Castro underlined the need to integrate lung health into primary care.

From left to right: Frazer Goodwin (EFA Policy Coordinator), José Luis Castro (WHO Special Envoy for Respiratory diseases), Susanna Palkonen (EFA Director)

European Lung Health Group marks two years

At the Congress, the European Lung Health Group (ELHG) met in person and marked two years of cooperation under the #KeepBreathing campaign. EFA and members of the group shared updates and discussed how to keep building stronger EU-level action for respiratory health. We underlined the need for greater investment, prevention and care, and discussed how an EU Lung Health Plan could help coordinate efforts across countries.

European Lung Health Group in person meeting at ERS Congress 2025

Research and patient experience in 3TR

Progress in asthma research was shared at the EU-funded 3TR project meeting, where patients, researchers and clinical experts presented results and insights. EFA former president and patient expert Breda Flood spoke about living with severe asthma and how effective treatment has allowed her to live a fuller, healthier life. The meeting highlighted the importance of early disease control and preventing flare-ups to protect long-term health.

3TR project meeting at ERS 2025

Partnering for better asthma care

At the GINA Global Initiative for Asthma meeting, EFA Director and GINA Advocate Susanna Palkonen joined partners to discuss global evidence-based priorities for asthma prevention and access to care. With Professor Guy Brusselle stepping in as GINA Chair, the group looked ahead to future priorities, including the collaboration for World Asthma Day. EFA thanks Professor Arzu Yorgancioglu for her long-standing support for the About Asthma project, which brings  GINA strategies into accessible information for patients in several languages, and fosters collaboration with GINA and GAAPP on patient patient-centered theme for World Ashtma Day.

Guy Brusselle (GINA Chair) and Susanna Palkonen (EFA Director)

Patients as partners in care

EFA joined a panel at the Menarini Symposium. EFA Director Susanna Palkonen presented a new European Delphi consensus guide, co-developed by pulmonologists, primary care physicians, patients and patient representatives on patient-centred asthma care, which helps healthcare professionals and patients tailor the choice of treatment through physician and patient collaboration.

Exchanging knowledge at the World Village

At the ERS World Village, EFA and our members shared activities to improve respiratory health across Europe. EFA presented the COPD Beyond Care project and Raising the Bar for COPD Standards of Care report, calling for earlier diagnosis, stronger prevention and equitable, high-quality care for all COPD patients in Europe.  Members of our community, including Liliya Gentet from FFAAIR (Fédération Française des Associations et Amicales de malades, Insuffisants ou handicapés Respiratoires) presented initiatives to help people with COPD stay active and improve quality of life. Armando Ruiz from Asma y Alergia España introduced a new manifesto calling for global action with local impact. The World Village was a valuable space for patient organisations, researchers and professionals to exchange ideas and experiences. 

The ERS Congress 2025 showed how patient expertise, clinical knowledge and policy can come together to drive better respiratory health for all to #KeepBreathing.

From 16 to 19 September, EFA actively participated in the annual EADV Congress in Paris, hosted by the European Academy of Dermatology and Venereology, alongside several parallel side events. This year, our presence held particular significance, following the recent adoption of the World Health Assembly (WHA) resolution recognising skin diseases as a global public health priority.

Together with members of our community, Global Skin and GAAPP, we brought the patient perspective to the forefront of discussions and maintained a strong presence in the Patient Organisation Area. Our booth showcased EFA’s patient-driven advocacy and initiatives, including the impactful awareness efforts around World Atopic Eczema Day and a preview of our upcoming advocacy plans for the year ahead.

Can AI provide reliable treatment and care advice for Atopic Eczema patients? 

During the session titled “AI and Social Media Strategies in Dermatological Practice”, EFA Director Susanna Palkonen and dermatologist Kenneth Thomsen led a timely and thought-provoking discussion on the role of Artificial Intelligence in supporting the care and lives of people with Atopic Eczema (AE). Susanna’s presentation was entirely based on feedback from EFA members atopic eczema working group.

The topic resonates strongly in today’s climate of growing interest in AI, especially as atopic eczema patients often seek reliable information and support, yet frequently feel isolated and uncertain about their treatment options. In this context, AI may appear to be a promising tool to bridge information gaps.

Susanna and Kenneth explored both the potential and limitations of AI. While AI can offer general information about the disease, instructions of use and kind emollients to use  , social and financial support, daily planning, and emotional coping strategies, it falls short in delivering the personalised, multidisciplinary care and treatment advice that AE patients require. AI lacks access to full patient histories and cannot reliably provide clinical advice for complex conditions like atopic eczema.

Their key message: AI can be a helpful resource for patients and healthcare professionals if used cautiously and critically—not as a substitute for medical advice or clinical experience, but as a tool. They also emphasised the need for accountability and transparency from AI developers, calling for collaboration with healthcare professionals and patients to create needs-based, trustworthy AI tools.

Collaborating for change with the AE global community

Beyond the scientific sessions, EADV offered a valuable opportunity for EFA to engage with our community and partners, including national and European patient organisations, EADV, corporate partners, and healthcare professionals. Together, we discussed current and future initiatives around Atopic Eczema and beyond, with a particular focus on advancing the implementation of the WHA resolution on skin diseases.

We participated in the Europe Health Policy Influencers Forum, hosted by GlobalSkin Europe, where we collaborated with fellow patient groups to strategise on influencing policy change through targeted advocacy. Through best practice sharing and hands-on workshops, we contributed EFA’s experience in European-level advocacy and contributed to brainstorming on more effective campaigns for skin disease awareness and policy reform.

Achieving the goals of the WHA resolution will require a global, multi-stakeholder effort. By joining forces with GlobalSkin—our long-standing partner in the World Atopic Eczema Day campaign—alongside EFA members Društvo Atopijski dermatitis (Slovenia) and AADA Asociación de Afectados por la Dermatitis Atópica (Spain), and other GlobalSkin Europe members, we are committed to amplifying the voices and needs of patients across Europe and beyond.

EADV was not only an opportunity to strengthen collaborations with patient organisations and corporate partners, but also with healthcare professionals. Since the beginning of 2025, EFA has been member of the EADV Patient Advocacy Taskforce. In Paris, the Taskforce gathered to discuss current priorities, the new direction for future collaboration and the role of patient organizations in upcoming initiatives.

As the Congress concluded, our commitment remains strong: to build a future where every AE patient has access to comprehensive care, meaningful support, and the understanding they deserve. The EFA community continues to drive real change for Atopic Eczema patients in Europe—because every voice matters.

The European Commission has presented its proposal for the Multiannual Financial Framework (MFF), covering 2028–2034. Worth nearly €2 trillion, this long-term budget will decide how Europe spends on its top priorities, from competitiveness and defence to climate resilience and migration. For the 200 million people in Europe living with allergy, asthma and COPD, the MFF is more than a financial plan: it will determine whether the EU invests in the healthcare, prevention and preparedness patients urgently need.

EFA responded to two of the six consultations: on civil protection, preparedness and response to crises and  on cross-border education, training and solidarity, young people, values, and civil society. In both, we brought the respiratory patient perspective, calling for investments that protect vulnerable populations and support health civil society organisations. In a time of climate change, medicine shortages and the risk of new pandemics, we urged that health remains a visible priority in the EU’s budget.

What is in the new EU long-term budget?

The Commission’s proposal, published between July and September, aims to be flexible and impactful, addressing Europe’s biggest challenges from energy security to competitiveness.

One major shift compared to the previous budget is related to health. The EU4Health programme, which previously represented the budget dedicated to health, has been absorbed into the new European Competitiveness Fund. This leaves no stand-alone pot for public health and represents a missed opportunity to give healthcare the visibility it deserves. However, opportunities remain. Investments in preparedness and crisis response can still support patients with chronic diseases if health is maintained as a priority.

Against this backdrop, EFA has identified three areas where the MFF must act to support the respiratory community: access to care, investment in health systems and prevention of respiratory diseases.

EFA priorities for the MFF

Access to care

Under the MFF’s main feature ‘Driving prosperity via competitiveness, research and innovation’ the EU focuses on health and biotech industry. EFA welcomes this, but stresses that intellectual property barriers must not block access to new treatments. The upcoming EU Biotech Act should ensure innovation translates into real progress for patients with unmet needs.

Investment in health

Health is not a cost but an investment. Under the MFF’s main feature ‘Investing in people, Member States and regions’, the EU wants to maximise the impact of every euro spent. EFA calls for stronger healthcare systems that can cope with ageing populations and rising rates of chronic diseases such as COPD. Preparing now will protect both patients and Europe’s economic resilience.

Prevention of respiratory diseases

Prevention is a key pillar of public health and must be reflected in the budget. Both in the political guidelines of Commission President Ursula von der Leyen, and in the mission letter of Commissioner for Health Olivér Várhelyi, preventive health emerges as a central priority for the Commission.

Under the MFF’s main feature ‘Fostering education and democratic values’ the EU should support health literacy and access to key information for health decisions, like vaccines.

Regarding the MFF’s main feature ‘Protecting people and building preparedness and resilience to face new challenges’, we welcome the proposed €400 billion crisis mechanism for emergencies such as climate-driven heatwaves, which hit respiratory patients hardest. But preparedness should go further than emergency response. Adaptation to long-term threats like climate change must also be funded.

Finally, under the ‘New own resources to match our common ambition’ a tobacco excise duty is expected to generate around EUR 11.2 billion annually. EFA asks the Commission to communicate on the public health risks of tobacco and to not delay the revision of the EU Tobacco Products Directive any further.

As a next step, the decision on the future long-term EU budget and revenue system will be discussed by Member States in the Council, acting by unanimity, with the consent of the European Parliament for the MFF.

For patients, the message is clear: Europe’s long-term resilience depends on investment in health. The MFF is an opportunity to strengthen access, prevention and preparedness and to ensure respiratory health is not left behind.

Read EFA’s response to the consultations here.

The lungs and the heart work together to keep us alive. The lungs bring oxygen in and the heart pumps it through the body. When one system is affected, the other is often impacted too. For people living with chronic respiratory diseases such as asthma or COPD, this connection is part of daily life and health.

EFA shed light from the respiratory patient community on why heart and lung health cannot be separated in its response to the European Commission consultation on the first-ever EU Cardiovascular Health plan. For 200 million Europeans living with allergy, asthma and COPD, the Cardiovascular Health Plan is an opportunity to strengthen prevention, early detection and care and could become a blueprint for a future EU Lung Health Plan.

Why is the plan important for lung patients?

The Plan is the first of its kind for cardiovascular diseases. Like the Beating Cancer Plan, it has the potential to set a precedent for how Europe tackles other major non-communicable diseases. Its focus on prevention, early detection and screening is just as important for lung health.

Heart and lung diseases often overlap. COPD, chronic bronchitis and emphysema affect both systems, and patients with pulmonary hypertension or atrial fibrillation often also suffer from COPD. Smoking is the clearest shared risk: it contributes to heart attacks and strokes, while also causing COPD and lung cancer and worsening asthma. By tackling these risks together, the plan can save lives and reflect the reality of patients who rarely face one condition in isolation.

EFA recommendations - connecting the dots between heart and lung health

Recognising the vital connection between cardiovascular and respiratory health is essential for effective public health policy in Europe. EFA supports the EU Cardiovascular Health Plan, but urges the inclusion of respiratory diseases within its scope, given the frequent overlap in conditions such as COPD, pulmonary hypertension, and atrial fibrillation. Environmental and climate factors, worsen both heart and lung disease, while lifestyle risks like smoking compound the damage. EFA calls for integrated health checks, preventive strategies, vaccination programmes and awareness campaigns to reduce the burden of non-communicable diseases and improve quality of life for affected communities.

Addressing health inequities is crucial to reducing the burden of cardiovascular and respiratory diseases across Europe. Chronic respiratory diseases (CRDs), like asthma and COPD, disproportionately affect disadvantaged populations and contribute to disability and mortality, often in conjunction with cardiovascular conditions. Data shows that middle-aged adults in lower socioeconomic groups face up to 150% higher risk of premature death. Gender adds another layer: after puberty, women experience higher asthma rates and face unique challenges linked to hormonal changes and healthcare access. EFA calls on the Commission to integrate equity considerations into the Cardiovascular Health Plan and ensure targeted interventions that address these root causes of disparity.

Boosting research and innovation is essential to closing the gaps in cardiovascular and respiratory disease care across Europe. Despite their massive impact on society and the economy, cardiovascular and respiratory diseases remain underfunded and under-researched. This lack of reliable data undermines evidence-based policymaking. EFA welcomes the EU Cardiovascular Health Plan’s prioritisation of research and innovation and urges equal attention to respiratory diseases. New tools such as digital twins, artificial intelligence and personalised medicine show great promise for prevention, diagnosis and treatment. Research into women’s health is especially urgent, as the role of female hormones in inflammatory diseases such as asthma, COPD and atopic eczema remains poorly understood.

The EU Cardiovascular Diseases Plan offers a strong foundation for developing a dedicated EU Lung Health Plan. The plan’s pillars of prevention, early detection and care management are just as relevant for respiratory diseases. With the European Commission reaffirming its commitment to tackling non-communicable diseases (NCDs) through initiatives like the European Health Union and the ‘Healthier Together’ programme, now is the time to expand policy action to include chronic respiratory conditions. EFA urges the Commission to seize this momentum and establish a dedicated EU Lung Health Plan to address the growing burden of respiratory disease.

The European Commission is expected to adopt the EU Cardiovascular Health Plan in the fourth quarter of 2025. EFA will continue to ensure that the voice of the respiratory patient community is reflected in this process, keeping lungs on the EU health agenda.

You can read our full response here.

Brussels, 14 September 2025 - Today, on World Atopic Eczema Day, 204 million people worldwide^[1]—along with their families, caregivers, patient organisations, and healthcare professionals—stand together to raise awareness about the condition and its profound, multidimensional burden.

Atopic Eczema, is one of the most common skin diseases globally. It impacts people of all ages and up to 20% of children^[2]. This year’s campaign, “Our Skin, Our Journey”, shines a spotlight on the #AtopicEczemaJourney—capturing the lived experiences of patients, both as individuals and as a community. The campaign invites us to see beyond the skin and recognise the emotional and physical rollercoaster of living with a condition that often starts in early childhood and evolves over a lifetime.

The journey of someone living with atopic eczema is shaped by daily care routines, physical and emotional impact, and frequent interactions with the healthcare system. From sleepless nights due to unbearable itch to the need for constant skin care, the condition demands continuous management. Patients may experience painful flare-ups, frequent doctor visits, changes in treatment plans, and even feelings of isolation or frustration. But the journey can also include positive milestones, such as finding the right treatment, encountering a supportive patient organisation, community or healthcare professional.

World Atopic Eczema Day 2025 is a moment to share these stories. It is an opportunity for patient organisations, patients, caregivers and healthcare professionals to share their experiences with the #AtopicEczemaJourney, their challenges, their success stories, positive encounters or inspiring support received. 

Atopic Eczema is too often dismissed as “just a skin condition.” In reality, it is a chronic, inflammatory, and systemic disease marked by relentless itching, redness, and skin lesions. These symptoms go far beyond the skin, significantly impacting the quality of life of patients and their families. Beyond physical symptoms, the disease can lead to psychological stress, social isolation, and economic burden.

Together with the International Alliance of Dermatology Patient Organisations (GlobalSkin), the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) is leading the World Atopic Eczema Day campaign, shaped by broad community engagement. Healthcare professionals, health policy decision makers and all stakeholders are also invited to recognise the burden of Atopic Eczema, participate in the campaign and take action to ensure patients receive timely and efficient care.

Quotes

“1 in 4 European patients struggle to cope well with their atopic eczema. With ‘Our Skin, Our Journey’ we want to bring forward the daily struggles, but also the positive experiences of patients, caregivers, patient organisations and healthcare professionals, coming together as a community to demand better access to the care and support they need to better cope with their atopic eczema journey”.
Marcia Podestà, President, The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA)

“On September 14, we unite as a global patient community for World Atopic Eczema Day. We raise awareness about this condition and the impact it has on the millions of patients and caregivers worldwide. We recognize how this multi-dimensional disease impacts the mental and physical wellbeing faced by people living with atopic eczema and restricts their lives. We call upon policy makers and health care providers to join us in #OurSkinOurJourney campaign and demonstrate how they support and care for atopic eczema patients all over the globe.” 
Jennifer Austin, Chief Executive Officer, GlobalSkin

About The Organisations

The European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) is the voice of the 200 million people living with allergy, asthma and chronic obstructive pulmonary disease (COPD) in Europe. We bring together 48 national associations from 28 countries and channel their knowledge and demands to the European institutions. We connect European stakeholders to ignite change and bridge the policy gaps on allergy and airways diseases so that patients live uncompromised lives, have the right and access to the best quality care and a safe environment. Learn more at efanet.org and on Facebook, X, LinkedIn, Instagram and YouTube.

International Alliance of Dermatology Patient Organizations (GlobalSkin) is a unique global alliance, committed to improving the lives of skin patients worldwide. With 265+ Members organizations globally, they nurture relationships with their membership, partners and all involved in healthcare— building dialogue with decision-makers around the globe to promote patient centric healthcare. GlobalSkin has been working with the global Atopic Eczema Community to identify common issues related to atopic eczema, share information and insights, and work together to find solutions. Learn more at GlobalSkin.org and on Facebook, X, LinkedIn, Instagram and Flickr.

World Atopic Eczema Day is coordinated by the International Alliance of Dermatology Patient Organizations (GlobalSkin) and the European Federation of Allergy and Airways (EFA). 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.

^[1] Tian J, Zhang D, Yang Y, Huang Y, Wang L, Yao X, Lu Q. Global epidemiology of atopic dermatitis: a comprehensive systematic analysis and modelling study. Br J Dermatol. 2023 Dec 20;190(1):55-61. doi: 10.1093/bjd/ljad339. PMID: 37705227.

^[2] https://efanet.org/images/2018/EN_-_Itching_for_life_Quality_of_Life_and_costs_for_people_with_severe_atopic_eczema_in_Europe_.pdf

Local and international food supply chains can be significantly disrupted due to exceptional events such as pandemics, natural disasters, wars, famines among others. In these situations, people often have no choice but to buy what is available. For those living with food allergy, the lack of choice can be frightening, especially when food labels are unclear or incomplete. A single unlabelled allergen on the packaging can turn a stressful situation into a medical emergency. Consumers with food allergies must always be fully aware about the food they are about to purchase, including during emergencies.

EFA food allergy community has brought the patients’ perspective on this topic to the Codex Committee on Food Labelling (CCFL), through a consultation on the development of a key global guideline on food labelling during emergencies.

No exceptions for allergy safety

Flexibility in food labelling may be needed in emergencies, but legal labelling requirements related to health and safety must always apply. EFA strongly opposes any derogations and ill practices on allergen labelling, reminding Codex of the recent example where sunflower oil shortages led to a replacement with allergenic ingredients. In some European countries, these were only listed as “vegetable oils and fats”, creating uncertainty for consumers with food allergy.

Digital information cannot replace labels

Even in emergencies, people must be able to read clear and accurate allergen information directly on the product they buy. If digital tools are used to share additional information, they must be duly updated to reflect any emergency changes and avoid outdated or misleading information.

Transparent communication and consumer feedback

Emergency measures can only work if consumers understand them. EFA called for clear communication through all channels, explaining why measures are introduced, which products or sectors are affected and which communities might face high risks.

Consumers should not just receive information, but they should also be able to react. This is why a public mechanism must be in place to collect reports of problems, concerns, or disruptions linked to emergency measures to fix possible mistakes.

Stakeholders must help reach affected communities

In emergencies, patient organisations, consumer groups and healthcare professionals play an important role in reaching people who might not have easy access to official updates. EFA emphasised that these stakeholders must be formally involved in information sharing to ensure that no one is left without necessary updates related to allergens.

We thank our Food Allergy Working Group members - Food Allergy Italia and the German Allergy and Asthma Association (DAAB) for their expertise and contributions. EFA will continue working with our community to ensure that even in time of crisis, food labelling remains clear, reliable and safe for people living with allergy.

Read EFA's full response here.