EFA governance values are transparency, independence, accountability and patient perspective.
2019 Annual General Meeting
To put that in practice, at high level 34 European allergy, asthma and COPD patient leaders from 16 countries gathered in our Annual General Meeting in Brussels, coinciding with the important year of European Parliament elections. Held in connection with the launch of our flagship campaign #ShowLeadership, the AGM maximised national patient representatives direct facetime with running Members of the European Parliament, to present them with the unified request to show leadership and address the needs of allergies and airways diseases patients through real policy change. Four Member representatives had meetings with 10 MEPs.
Besides, the members approved EFA Annual Report for 2018, the year when we focused on patients with severe disease, and discharged the Board and auditors for the accounts for that year. Plans and budget for 2019 were agreed and board elections for vice president and one board member (Secretary of the Board) reaffirmed the composition of the EFA board:
- Mikaela Odemyr, Sweden, President,
- Erna Botjes, the Netherlands, Vice President,
- Hubert Nettel (†), Austria, Treasurer,
- Carla Jones, UK, Secretary of the Board
- Ilkka Repo, Finland, Member-at-large.
94% members said that their expectations for the AGM were met, and all were satisfied or very satisfied with the meeting.
Sustainable Corporate Funders meeting and collaboration
EFA funders’ annual meeting happened earlier than ever, beginning of July in order to allow foreseeable EFA programme for 2020 that builds on efforts during previous year. It was also an opportunity for the whole board, staff and funders to put a face to EFA, and vice-versa, and to discuss our progress from the funders’ perspective. The funders scored the meeting really useful, especially linked to the partnership with EFA and the meeting met their expectations.
EFA advocates for a strong patient participation across healthcare, and that’s why EFA patient experts participated in our sustainable corporate funders dedicated advisory boards and/or committees upon request, but with a long-term view. We also advised in high level, such as a Medical Office of clinical trials.
EFA Board
EFA board met 4 times and steered the strategy and partnerships, which EFA has many.
We consulted members on our vision and mission, what EFA and only EFA can do, and crucially on the added value of EFA for Members. We also scoped the value of partnership with EFA with our partner organisations: doctors, wider patient community, environment, public health and corporate partners, and conducted operational environment analysis for all our audiences. The results will help when members convene for the next AGM and we revamp a strategy 2020-2025, but it is clear that EFA’s core is representing people with allergy and airways diseases at the European level, opening doors that members cannot.
Expanding EFA’s network of patient associations
EFA has 42 members and one membership application was received from a patient association in Serbia, a new country in our network, right on time for the #Showleadership on patient involvement towards the end of the year. It was provisionally accepted by the Board subject to ratification by the Annual General Meeting 2020. We made contacts with six new respiratory and patient associations in Georgia, Malta, Slovenia and Turkey who wish to join EFA and we hope to welcome them soon in EFA family.
The Membership Survey that we launched end-2018 show several trends: Members are happy with the work done by EFA to #Showleadership as the voice of asthma, allergy and COPD patients at European level. However, EFA should improve the way we communicate internally and the EFA Working Groups dynamics. They perceive that their association is very engaged (35.71%) and moderately engaged (64.28%) with EFA. Most of them (85.7%) engage in EFA events and initiatives to support the allergy, asthma and COPD patients’ community and to be part of this community’s voice. The results of this survey will support the development of EFA’s Membership Strategy in 2020.
In 2019 all six EFA Working Groups (COPD, Asthma&Allergy, Food Allergy and Atopic Eczema; Prevention and Patient Education) were held at least three times throughout the year via online conferences and all met face-to-face once at the Annual General Meeting. They had an essential role in advising our research and contributed to progress of several EFA projects, disseminating outcomes at national level and providing their input in EFA’s responses in EU policy consultations.
Partnerships to #ShowLeadership
Through partnerships, highlighted throughout this report EFA advances in sharing leadership for the rights of people with allergy and airways diseases. EFA had the first meeting with the EADV leadership in Brussels to formalise collaboration.
We joined as an associate member the Global Skin to #ShowLeadership, together European and Global atopic eczema patients.
In Memoriam - Hubert Nettel
In September 2019, EFA Board Member and Treasurer Hubert Nettel (from the Austrian Lung Union) sadly passed away. For many years, Hubert served his community and advanced the mission of the patient voice, working to ensure and improve the quality of life of patients, increase education and public knowledge; and convey the stories of patients with allergy and respiratory diseases. Hubert brought the best of his nearly 40 years’ experience of working with the commercial sector into EFA, serving as EFA Treasurer from 2016. Hubert was an Executive Board Member of the Lungenunion and worked with members of the Austrian Society of Pneumology, representing the organisation in external events. It is determination and compassion that describe Hubert as a colleague and friend. We are struck by sadness, but grateful for everything you did. We will always remember you and your contribution. Thank you, Hubert!
