EFA secured sufficient resources for our work, thanks to the trust, and shared but independent belief of equal allergy, atopic eczema, asthma and COPD patient-centred care and prevention.
Sustainable corporate partnerships
EFA secured sufficient resources for our work, thanks to the trust, and shared but independent belief of equal allergy, atopic eczema, asthma and COPD patient-centred care and prevention.
Our 11 sustainable partnerships with companies (Abbvie, Astra Zeneca, Boehringer Ingelheim, Chiesi, DBV Technologies, OM Pharma, Pfizer, Regeneron, Roche, Sanofi and Viatris) who each contributed 30,000 EUR unrestricted grants to EFA’s mission advocating change for all people with allergies and airways diseases in 2023.
EFA community projects were supported by nine multi-company grants on atopic eczema, allergy, asthma, COPD and respiratory disease care advocacy and patient evidence, and members capacity building.
We held discussions with four potential new partner companies, to join our corporate partners community for 2024, and refreshed relations with one former funding partner.
EFA Director contribution to sustainable corporate partners
- 5 clinical trials guidance advisory groups on atopic eczema, asthma, and COPD innovation
- 7 advisory committees on atopic eczema, asthma, and COPD, for patient-centred policies and companies
- 2 trade associations collaborative think tanks meetings (EFPIA-EPF Patient Think Tank and Vaccines Europe Influenza Steering Committee)
In November, we organised the EFA’s Corporate Partners Annual Meeting, where the Board reported on our progress and EFA’s new community approach: all our partnerships connect with our members communities under EFA’s mission and strive for patient-centred care and prevention and innovation through advocacy, resources, and collaboration. The outcomes showed huge commitment to contribute to EFA community both at European and national level with resources, expertise, networks, visibility, transparency, sharing EFA feedback, to overcome challenges patient organisations face.
Public funding partners
In 2023, we continued working with public donors, through the implementation of four EU funded projects and activities within the framework of an EU Research Cluster on Indoor Air Quality, while collaborating with different consortia in the development of new project proposals. EFA is desired partner in EU research because of the patient community we represent, but also our track record.
We participated in three EU research project bids on innovation in allergy and respiratory care and prevention. Our participation was evaluated as high added value for the proposals and raised the score of these bids.
Medical societies
One of the most natural partners for EFA is to connect with European level medical societies. This collaboration is built daily and involves many prominent representatives within EFA’s community, whose expertise and disease specific knowledge is fundamental to ensure patients’ voices and unmet needs are considered in clinical practice and research.
EFA and the European Respiratory Society
The European Respiratory Society is the largest scientific and clinical organisation in respiratory medicine in Europe, gathering over 35,000 healthcare professionals. EFA has a longstanding relationship with ERS and its foundation, the European Lung Foundation (ELF).
In 2023, EFA partnership with ERS/ELF was conducted with ERS/ELF
- Armando Ruiz (EFA Vice-President) is EFA board lead at the European Lung Foundation Patient Advisory Committee (PAC)
- Mikaela Odemyr (EFA past-President) is Chair of ELF PAG
- Valeria Ramiconi (EFA Programme Manager) is a member of the SHARP Severe Asthma patient advisory group (PAG), an EU funded project
In May, EFA Board Secretary Frida Rún Þórðardóttir was invited to bring the asthma and COPD patient perspective to the ERS online event to mark World Asthma Day 2023, which discussed air pollution in Europe.
In September, an EFA Delegation of six representatives participated in the ERS Congress in Milan, Italy. EFA together with ERS, ELF and other six European level respiratory patients’ associations, organized a meeting within the framework of the European Lung Health Group and presented the #KeepBreathing campaign.
From left to right, ERS President Prof. Carlos Robalo Cordeiro, EFA Director Susanna Palkonen, ERS Executive Committee General Secretary Judith Garcia-Aymerich, and ERS Executive Director Werner Bill showing their institutional support to the ELHG #KeepBreathing campaign.
EFA and the European Academy of Allergy and Clinical Immunology (EAACI)
EFA continued the partnership with the European Academy of Allergy and Clinical Immunology (EAACI), the associations of clinicians, researchers and allied health professionals dedicated to improving the health of people affected by allergic diseases. EFA and EAACI have a Memorandum of Understanding since 2018, although EFA found difficulties in converging with the clinicians in 2023 into project activities such as the European Parliament Interest Group on Allergy and Asthma.
EFA is actively involved in the daily work of the medical society bringing the patient’s perspective:
- Marcia Podestà (EFA president) is board lead and member of the EAACI Patient Organisation Committee (POC), and member of the EAACI Ethics Committee
In 2023, EFA participated in the EAACI Congress in Hamburg, with two representatives. EFA’s Director, Susanna Palkonen, participated as a speaker in the “Benefits of engaging with patients in clinical trials and decision-making” session, organised by the EAACI Patients Organisations Committee (POC) and chaired by Ozlem Ceylan from Alerji ile Yasam Dernegi association (EFA member). The speakers of the session, representing patients, healthcare professionals and regulators, presented the importance of involving patients and patients’ organisations since the very initial phases of clinical trials.
EFA's Director presented the evidence that patient involvement in all stages of trials has benefits for trial on many aspects: more relevant results, economic efficiency, increased satisfaction of trial participants.
EFA and the European Academy of Dermatology and Venereology (EADV)
The European Academy of Dermatology and Venereology (EADV) gathers more than 9,500 healthcare professionals interested in dermatology care. In 2023, EFA attended the EADV Congress with a delegation of two. We held an EFA stand in the EADV Patient Organisation Area to share insights from our advocacy and projects on atopic eczema. See more in the Atopic Eczema project section.
In October, EFA supported the launch of a crucial Call to Action on chronic inflammatory skin disease, led by EADV. The Call, which centres around atopic eczema among others, has been reviewed and co-signed by EFA President and Director, who are acknowledged for their contribution. The Call to Action which has been endorsed by 24 organisations, is the follow up of a key study published by EADV on the Burden of Skin disease Europe. Both documents were presented in an event at the European Parliament in October.
During the launch of the Call to Action for Chronic Inflammatory Skin Disease, EFA enquired MEPs about the lack of interest to include atopic eczema within the EU Healthier Together Initiative.
EFA and European research networks
EFA not only works within consortia involved in EU funded research projects but is also a recognised partner within EU level research networks.
Marcia Podestà (EFA President) is a high-level representative to Global Allergy and Airways Network of Excellence (GA²LEN) with whom EFA has a Memorandum of Understanding, as mentioned before. She attended the Annual General Meeting, contributed to Anaphylaxis Guidelines, and was a speaker at the Masterclass on Anaphylaxis. She was also a speaker at the prestigious Paul Erlich seminar on AIT Allergen Specific Immunotherapy on Patient perspective to AIT and at the UFOREA Type-2 diseases forum ‘EUFOREUM’ on EFA Patient advocacy for care and prevention and members community capacity building.
EFA and other organisations and joint health initiatives
EFA and the International Alliance of Dermatology Patients Organisations (Global Skin)
EFA is active member of Global Skin since 2018. For the sixth consecutive year, EFA and Global Skin co-organising together the World Atopic Eczema Day (see more in the communications section).
In 2023, we were invited to present our advocacy journey on atopic eczema during the annual Global Skin Conference, celebrated in Brussels. As a member of the members advisory committee, we were honoured to be invited to host the conference dinner.
EFA and the World Skin Health Coalition
EFA gave the atopic eczema patient perspective as the only umbrella patient organisation specialised in atopic eczema in the World Skin Health Coalition. We participated in three partners meetings, and our Turkish member representative Ozlem Ceylan contributed to the Advocacy working group of the Coalition. Our participation results in messaging about how neglecting diagnosis and care of skin disease causes harm for the patient, our community experience about atopic eczema.
EFA and the Global Initiative for Asthma (GINA)
EFA is an active supporter of Global Initiative on Asthma (GINA) promoting accessible information for and with patients. EFA Director is one of the 20 worldwide GINA advocates, and as such participated in several webinars with the GINA Dissemination Committee.
In 2023, EFA presented GINA with our GUIDE Asthma project, and the need for equal access to the most updated information for patients on asthma management. This resulted in GINA nominating their Scientific Chair, Professor Helen Reddel to review the text for EFA’s AboutAsthma.org website.
EFA and the Global Allergy and Airways Patient Platform (GAAPP)
EFA is a founding member of Global Allergy and Airways Patient Platform (GAAPP). In 2023, we participated in the GAAPP Respiratory Summit, and Scientific Meeting for members.
As the only regional member of GAAPP, with a mandate for Europe, EFA invited GAAPP to partner in the GUIDE Asthma project, the AboutAsthma.org website, and the launch webinar. This was the first time both organisations we collaborated for the joint benefits with all patients with asthma in Europe and globally.
EFA and the International Respiratory Coalition
EFA was invited as moderator during the International Respiratory Coalition (IRC) Congress in Lisbon in June 2023. EFA was represented by an EFA delegation of two EFA staff in the gathering that took place in Lisbon (Portugal).
EFA Director of Policy and Communications Isabel Proaño and Programme Manager Agata Papotto participated in the IRC Summit where EFA co-moderated the session on Better Prevention.
EFA and the EU Partnership for Healthcare Systems Sustainability
Throughout 2022 and 2023, EFA contributed to the work of the Partnership for Healthcare Systems (EU PHSSR) providing with the allergy and respiratory patients perspective. We are signatories of the high-level recommendations report and drove the initiative by moderating one of the panels in the launch even at the European Parliament.
EFA and the International Paul-Ehrlich-Seminar
As a trusted organisation, EFA was invited as the first patient organisation to participate in other high-level meetings and conferences, such as the 16th International Paul-Ehrlich-Seminar (IPES), which brings together scientific experts and regulators in the area allergy. EFA President Marcia Podestà highlighted the patient needs in further development of allergen immunotherapy (AIT), which include better access, improved patient involvement in clinical trials and enhanced education by both patients and doctors.
