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, representative and independent allergy and chronic respiratory disease patient advocates. To increase capacity, EFA supports patient groups by creating opportunities, presenting possibilities and providing knowledge.

Every year, EFA organises several trainings for EFA members. The training sessions are designed according to the patient groups’ needs, aiming to support them in running a successful patient association at national or local level. 

Annual Meet and Greet the EU Institutions workshop 

EFA arranges an annual ‘Meet & Greet the EU institutions workshop’. Inviting members to Brussels, the programme aims at increasing members’ knowledge on EU institutions and relevant legislation affecting asthma, allergy and COPD patients.  

Organising 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 Online training

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

The webinars' presentations are available herer:

  1. Communication session I and Communications session II with Vicky Marissen, Partner at EPPA, a management consultancy, specialised in trainings on communication. It tackles the questions on what does it take to be a good communicator? What are the components of good communication strategy? How to use social media? 
  2. Governance session I and Governance session II with Elena Balestra, Membership and Capacity Building Officer at the European Patients Forum (EPF), an umbrella organisation which works with patients' groups in public health and health advocacy across Europe. Learn more on the skills, tools and frameworks you need to boost your organisation’s performance.
  3. Membership session I and Membership session II with Elena Balestra, Membership and Capacity Building Officer at the European Patients Forum (EPF), telling us more on overcoming challenges towards engagement and tips and tricks on membership building. 
  4. Patient advocacy session I and Patient advocacy session II by Tamsin Rose, an expert in providing strategic advice on health and civil society development. The webinair focuses on training patient leaders to develop effective advocacy skills to influence national and European health policies.
  5. Fundraising session I and Fundraising session II with Antje Fink-Wagner, EFA's Corporate Relations and Fundraising Manager, addressing the setting of a fundraising plan, tips and tools needed for an efficient fundraising for your organisation and for funding specific projects.
  6. Project management session I and Project management session II with Hans Wolters, from the Organisational Development Support (ODS), a consultancy specialised in trainings on project management. The webinar provides an introduction to project management, useful programmes and tools, and shows how to maximise the impact of your projects.