Annual General Meeting 2020
At the end of March, EFA organised its first online Annual General Meeting of Members (AGM). It was initially programmed to be celebrated in Reykjavik (Iceland) but had to go virtual due to the pandemic. Since our constitution allows electronic voting and virtual meetings, we were ready to adapt. It was a fully working AGM where Members decided on EFA’s leadership and future.
The AGM re-elected Mikaela Odemyr from the Swedish Asthma and Allergy Association as EFA President until 2021 while our experienced all-around patient leader Erna Botjes from the Dutch Food Allergy Association was re-elected as EFA Vice President. We welcomed Marcia Podestà, President of Food Allergy Italia with strong skills in advocacy, and background in law, as new Board Member. In the new EFA Board, Carla Jones, our Board Secretary, started as EFA Treasurer and Marcia took on the Board Secretary position.
Online governance required new ways of working, but given that we are a European organisation, used to facilitating remote connections and sharing, adaptation was natural. The health and psychological stress of uncertainty required new health and safety policies to be set up based on the guidance of authorities for office work, whenever working from the office was possible and for staying a close-nit team that supports each other. In fact, the pandemic made us realise more than ever, how important having a strong EFA team is, and the responsibility we have as patient advocates.
EFA Board
After the first and only face-to-face meeting of the year, reviewing and approving documents for the AGM in February, the Board adopted a fully online working mode with monthly yet shorter 3-hour meetings, later followed by one hour follow up meetings. The board thanked Ilkka Repo from the Finnish Allergy, Asthma and Skin Federation, who served from March 2019 until the beginning of January 2020 as a Board member.
The board steered and guided the financial management and approved quarterly reports, projects, and the core programme, approved new financial mandates as usual and focused on our partnerships. As a priority, they mapped, discussed, and concluded on the priorities and needs of people with allergy, asthma, and COPD when it comes to COVID-19. They also revamped our objectives under inform, prevent, and care, the pillars of our work as a European allergy, asthma, and COPD patient community, based on the feedback received during our strategy review process. New statutes were scrutinised by the board and finalised by the end of the year.
We said farewell to our fabulous Giuseppe De Carlo, EFA Director of Operations and Projects after his 5,5 years of service as he embarked for his next challenge. At the end of year, Maximilian Kunisch, EFA’s innovative Communications and Policy Officer pursued his path of studies. Saying farewell also meant welcoming new spirit and talent. As such, we were glad to welcome Valeria Ramiconi as our Programme Manager and Eleanor Morrissey as our Communications and Policy Officer, with strong backgrounds in project management and communications, respectively.
PARTNERSHIPS
Partnership building for allergy and respiratory disease
We took on our role as liaison between members and the European bodies such as EMA and European Centre for Disease Prevention and Control (ECDC), making sure that the evolving information and tools on the COVID-19 pandemic were available for national patient groups on our website.
As planned, EFA initiated and developed the first ever advocacy collaboration between European level respiratory patient organisations representing cystic fibrosis, idiopathic pulmonary fibrosis, pulmonary hypertension and lung cancer, respiratory health professionals, the European Respiratory Society (ERS) , and the European Lung Foundation (ELF) under the Patients #ShowLeadership project. The aim was clear: raise the priority level for respiratory disease. We established partnerships with the ERS and ELF to coordinate together this larger partnership. As a bonus, this European Respiratory Collaboration, which named itself informally the European Lung Health Group, also became the Steering Committee of the MEP Lung Health Group at the European Parliament.
Also, under the #ShowLeadership project, we strengthened our partnership with the European Academy of Allergy and Clinical Immunology (EAACI), running together the secretariat of the European Parliament Interest Group (IG) on Allergy and Asthma in its second mandate. Under our leadership, a new partnership has emerged with young patients living with allergy and asthma and young researchers in the field. We developed the Allergy and Asthma Youth Parliament to engaging young people and compliment the work of the larger Interest Group.
We cemented our partnership with Global Skin by empowering collective global and European action on World Atopic Eczema Day, arising from our dedicated project. We further advanced collaboration with health professionals and the European Academy of Dermatology and Venereology (EADV) through our event in their congress which actively engaged the new EADV leadership.
In May, EFA's Mikaela Odemyr and Susanna Palkonen were invited to the new network of advocates of the Global Initiative for Asthma (GINA), the global guidelines for asthma management. Advocates will support the GINA Guidelines Implementation and Dissemination taskforce which is an important role to improve patients’ knowledge about the care they deserve and to have control over their asthma. EFA will connect the work of this taskforce to our members.
Mikaela Odemyr was elected by members of the European Lung Foundation Patient Advisory Group (ELF PAG) as their Chair. As such, she became part of the ELF Council too. ELF assists the European Respiratory Society (ERS) in integrating the patient perspective in the relevant work of the Society.
We participated actively in the European Federation of Pharmaceutical Industries Associations (EFPIA) Think Tank with European level patient organisations, which became the main forum to insert and discuss patient perspectives to industry responses to the COVID-19 crisis, ranging from enabling clinical trials, preventing shortages of medicines or vaccines and vaccine hesitancy.
EFA is a member of several core groups essential to our work: the Global Allergy and Airways Patients Platform (GAAPP), the European Patients Forum (EPF), the Health and Environment Alliance (HEAL), the Patient Access Partnership (PACT) and many more. We participated in their programmes and policy work, often in leading positions.
Sustainable Corporate Funders meeting and collaboration
EFA discussed with all our corporate partners individually on what their companies were doing to ensure that the care of the patients we represent was not compromised by the pandemic. EFA funders’ annual meeting happened earlier than ever, at the end of June, to allow for a comprehensive review of past efforts and future directions. The whole Board and staff participated in this half-a-day online meeting presenting on progress and project programme planned for 2021. The interactive workshop focused on ideas and expectations for improving outreach and engagement through the EFA projects that funders support. This gave us input to build on through the lens of funders. Based on the feedback received from the meeting, corporate sustainable partnerships with EFA are considered of high importance by our funder partners. So, instead of setting up a new corporate partnership framework, EFA concentrated on continue building the existing one, taking into account the challenges and opportunities brought by the pandemic.
EFA advocates for strong patient participation across healthcare services and organisations. For this reason, EFA board, staff and patient experts participated in our sustainable corporate funders’ dedicated advisory boards and/or committees upon request at least 20 times. This participation was crucial to providing the patient perspective on a number of topics.
Expanding EFA’s network of patient associations
In 2020, we welcomed two new members to our EFA family: Allergiaja i ja association (asthma and allergy, Serbia) and Drustvo Atopijski Dermatitis (atopic eczema, Slovenia). Additionally, other allergic and respiratory patient associations from Italy, Slovenia and Turkey were provisionally accepted by the Board subject to ratification by the Annual General Meeting 2021. We were also in close contact with other patient groups from Cyprus and Spain who wish to join our organisation.
Throughout the year, we held 18 calls with the EFA Working Groups (Allergy & Asthma, Atopic Eczema, COPD, Food Allergy, Patient Education and Prevention) in addition to the working group meetings we held during the virtual Annual General Meeting for 2020.
EFA Members’ role in these working groups meetings is key to support EFA, as they guide our positions and provide input to EFA’s work in major EU and European policies. Their involvement was also essential to coordinate World [Disease] Days, organise the EFA Allergy and Respiratory Patients’ Conference and define the EFA Strategy 2021-2027, ensuring EFA actions at EU level are in line with national priorities and needs.