Expert Patient Network

EFA sets a strong emphasis on the collaboration with its members and between them to influence European and national policies, exchange best practices and build capacity. 

Initiated in 2005, the EFA Working Groups drive leadership at the European level on disease-specific and cross-cutting topics affecting patients. In 2014, the EFA Capacity Building Program  was created. It aims at strengthening and extending the network of allergy, asthma and COPD patients associations in Europe.

The EFA Working Groups are an excellent channel for cooperation. EFA members support EFA by guiding, reviewing and commenting on policy documents such as consultations, positions and recommendations. Furthermore, they assist the development of EFA projects to ensure their correspondence to real members’ needs at the national level. 

Within the working groups, EFA members also share tools, actions, experience and information, increasing their capacity and success at European and national levels. For EFA, the provided information is also useful in order to stay tuned to national contexts. 

Six complementary working groups meet on a regular basis

The working groups are complementary to each other and have consultative and voluntary natures. The groups have contact every three months and meet face-to-face at least once a year at the EFA Annual General Meeting. 

Currently, six Working Groups exist:

  • Food Allergy Working Group: Members share best practices on food allergy management and the latest information and research in relation to this topic. The main priorities for this group are EU food labelling legislation, labelling and access to information, national and European guidelines on food allergy management and risk assessment, and food production such as cross contamination, anaphylaxis.

Acknowledgements: Contribution to EFA position on EU legislation on Information to Consumers on Prepacked Food (2005) and the EFA Food Detectives Project.

  • COPD Working Group: Members share national experiences on COPD preventative measures through tobacco control and quitting support. In addition, they examine new ways to improve access to healthcare, including early diagnosis and rehabilitation, and promoting physical exercise.   

Acknowledgements: Contribution to EFA Projects COPDMove (2017), Harmonizing Prevention and Other Measures for COPD Patients Across Europe (2014), Minimum Standards of Care for COPD Patients in Europe (2013). 

  • Allergy and Asthma Working Group: Members analyse new ways to improve healthcare access and reimbursement conditions for people living with asthma and allergy, and rethink other approaches to  increase awareness and better preventative measures in Europe.

Acknowledgements: Contribution to the Allergy and Asthma Interest Group at the European Parliament activities discussion (2015), the EFA allergy Awareness project (YEAR?). The group also participated in EU projects were EFA had partnered on allergy (MeDALL) and asthma (AirPROM, EARIP, U-BIOPRED, MyAirCoach).

  • Patient Education Working Group: Members share best practices to enhance patient education at national level and explore different ways of promoting patient empowerment like disease self-management (incl. eHealth), shared decision making and development of materials for patients use.

Acknowledgements: Contributions to the development of EFA project proposals (2017)

  • Environmental Determinants Working Group: The main points of discussion of the group are EU indoor and outdoor air quality legislation, pollen concentrations and information, EU chemicals’ regulation and research and exposure effects on asthma, allergy and COPD patient’s health.
  • Atopic Eczema Working Group: The group shares best practices and ideas to increase awareness on atopic eczema and improve their quality of life, the effectiveness of treatments, and the reimbursement conditions.

Acknowledgements: Contribution to EFA Atopic Eczema study on the Quality of Life and costs for people with severe atopic eczema in Europe (2017)

EFA aspires to further empower its members to become effective and independent allergy and chronic respiratory disease patient advocates. To increase capacity, EFA supports patient groups by creating opportunities, providing knowledge, and enabling the exchange of best practices.

Annual Meet and Greet the EU Institutions workshop  

EFA hosts an annual ‘Meet & Greet the EU institutions workshop’. The programme aims to increase members’ knowledge of the EU institutions and relevant legislation affecting asthma, allergy, and COPD patients.

Through meetings with Members of the European Parliament, the EFA Meet & Greet workshop also increases the number of patient groups active in the EU decision making process.

EFA Targeted training 

Every year EFA identifieone or more patients’ groups that hope to strengthen their competences and skillsThe training sessions are designed according to the patient groups’ specific needs to support them in running a successful patient association at national or local level.

2020 

EFA Allergy and Respiratory Patients Digital Conference 

In 2020, EFA organised the Allergy and Respiratory Patients digital Conference, a two-days event to give aglance into the latest innovation in research and care for Allergy and Respiratory patients, shedding light on the potential of digitalisation to improve the treatment and management of allergy, asthma, and COPD.

Digitalisation can play an important role in shifting healthcare from being disease-centred to patient-centred. But it also presents challenges in terms of regulations, policy framework and access. With the Allergy and Respiratory Patients Conference, EFA wanted to focus on the power of digitalisation and innovation to improve health services across Europe and empower allergy and respiratory patients in managing their care.

More than 150 participants from all over the world followed the event online and had the possibility to engage with speakers and experts working on allergy, asthma, and COPD.EFA members and patients’ groups had also the opportunity to participate to trainings to increase their digital literacy. 

You can find more details here.

Meet & Greet the EU 

The Meet & Greet EU training, part of the Capacity Building Programme 2020helped to build and guide the advocacy skills of EFA members, taking into consideration the current political setting, especially in view of the increased space that the health debate has gained in the European Union. The training gave members the skills and the tools to build up their own advocacy strategy, to maximise their policy influence towards Members of the European Parliament. Read more.

Previous editions 

2019 

In 2019 EFA organised a series of webinars for EFA membersto strengthen their skills on the use of social media for advocacy and awareness-raising, leveraging International Days at the national level, the role of patient organisations in collecting and sharing patients’ data for research antransparency and democracy in advocacy.

2018 

In 2018, EFA organised a series of webinars addressed to EFA members. The webinars covered a wide range of topics including fundraising, governance, communication, membership, project management and advocacy. During the webinars, participants were trained by external experts and invited to share their best practices.

Dear Visitor,

for regularly updated information on Covid-19 for allergy and respiratory patients, please consult our Covid-19 resource and information hub.
Stay safe!
The EFA Team