EFA’s Capacity Building Programme has served to strengthen the organisational, advocacy, and communication skills of our membership for seven years. Our sessions have varied on the topic and participation over the years, and they are carefully addressing the context in which our members operate. Each training is catered to the specific needs of our national patient associations with the aim to help them amplify their own work at the national level.

In 2021, EFA conducted several capacity building sessions including a leadership training for the Allergy and Asthma Youth Parliament, Meet & Greet sessions with the European Medicines Agency and EU research funding programmes, and several personalised trainings to Members targeting their direct needs.

Meet & Greet the EU: “Patient involvement in EU Funded Projects”

15. Meet and Greet EU Projects

[Participants from Meet & Greet: EU Projects]

EFA organised the second Meet & Greet the EU training on ‘Patient Involvement in EU Funded Research Projects’ to provide EFA Members with a clear picture of how patients can help advance the field of medicine or prevention efforts related to allergy and respiratory disease hand in hand with researchers.

By empowering patients and their organisations with the knowledge and resources to get involved, EFA is helping to foster more patient-centred EU funded research projects and project outcomes. EFA also contributes to the accessibility of diverse public funding sources for patient organisations.

Sessions featured patient experts from the European Patients’ Academy on Therapeutic Innovation (EUPATI), EFA affiliated patients and Member organisations who shared best practices, the Head of Unit of the European Health and Digital Executive Agency (HaDEA), Mr. Stephane Hogan, and the Belgian National Contact Point for Horizon Europe.

The training welcomed over 10 participants from a range of patient organisations from the EFA network and beyond. As a result, 100% of survey respondents reported that the training was ‘very useful’ overall, and with respect to their work. Prior to the session, respondents reported ‘average’ levels of knowledge about EU funded research compared to 66% reporting an increase to ‘fair knowledge’ post-event. 100% of respondents were ‘very satisfied’ with the training.

This training was also an opportunity to evolve the EFA-Member relationship. Attending Members reported that they would like to receive more information about specific project calls and proposals, with the opportunity to collaborate with EFA. Taking this feedback immediately into consideration, EFA has already approached four Member organisations to join an EU-funded research project consortium, as a cohort.

Tailored Trainings

This high-quality training has provided us with many elements, and will allow us to put in place tools to achieve our objective: to recruit and RETAIN members and volunteers.

17 CB training

[Participants from EFA Capacity Building for AEPNAA and FENAER]

EFA offered a variety of tailored capacity building trainings to strengthen and grow the network of Allergy, Asthma and COPD patients’ associations in Europe in 2021. This process consisted of EFA first identifying existing gaps or needs within an organisation, then sought out experts to lead the trainings, and we supported with the organisation and implementation of the trainings and material.

EFA offered tailored trainings for all EFA Trial Members, to foster their continued development and eventual transition into full EFA Full Membership. Six representatives took part in the trainings, from three patient organisations across two countries: Atopic Dermatitis Association (Društvo Atopijski dermatitis) and Institute Atopika (Zavod Atopika) of Slovenia, and Allergy and Me (Alergija i ja) from Serbia. Following their trainings on the basics for successful advocacy, stakeholder engagement and public relations, participants noted they felt ‘very’ or ‘totally’ empowered to apply their new knowledge and skills to their work.

As a true indication of the training series’ success, the two Trial Members that reached the end of their trial period were subsequently eligible to transition to full EFA membership.

EFA also offered tailored trainings to four Full Members based on organisational need and experience: the French Allergy Prevention Association (AFPRAL), COPD Support Ireland, the Spanish Association for People with Food and Latex Allergy (AEPNAA) and the Spanish Federation of Respiratory Diseases’ Associations (FENAER). EFA hosted three trainings, for three different member countries, reaching 20 patient representatives. While they studied a diverse array of material, from public relations to fundraising, participants reported that the trainings were similarly ‘useful’ or ‘very useful’ to their work.

Follow-up training meeting

Back in 2019, the Asthma and Allergy Patients Association of Georgia was granted access to the EFA Capacity Building Programme to support its establishment. Since then, the organisation has gained the capacity to formalise its status as a charity in the Caucasus region. Following this evolution, EFA organised a structured follow up meeting to identify existing organisational needs and looking at the meeting outcomes, EFA offered to train the group on fundraising and volunteer recruitment. The training is planned for 2022 and will serve to support the development of a vital organisation in a starkly underrepresented region of Europe, who we hope will soon fulfil the criteria for EFA Membership.