When 8 organisations founded the European Federation of Allergy and Airways Diseases Patients’ Associations (EFA) in 1991, the ambitions even then did not imagine that 30 years later there would be a membership of 42 organisations working together to improve the lives of patients living with allergy, asthma and COPD across Europe.
EFA was first made up of organisations from Finland, Germany, Iceland, the Netherlands, Norway, Poland, Sweden and the UK who sought to develop a strong voice allergy and asthma patients at the European level. While EFA was welcoming more patient organisations from other European countries, in 2003 it expanded its disease areas to also cover COPD, to embrace the national COPD advocacy our members were driving. Now, the current 42 members stretch forged with solidarity across Europe and include members from EU and non-EU countries.
EFA President Carla Jones reflects on EFA’s achievements: “It has been a pleasure to be a part of EFA’s journey and watching it grow since I joined Allergy UK in May 2015. I personally fondly remember when Allergy UK hosted EFA’s AGM in London in 2017. Our members also got to have a meal hosted by the Westminster All-Party Parliamentary Group for Allergy and Respiratory Diseases, which was a privilege to support this event with our EFA Members.
I also am thankful for previous board members of EFA throughout the years, some of whom have sadly left us, but the collaborative commitment to patients across Europe is always present.”
EFA 30 years: from patients to patient centred policies
EFA’s mission is to advocate change for all people with allergy and airways diseases in Europe. Our work commits to raise awareness, increase prevention of disease and symptoms, and improve care for patients living with allergy, asthma and COPD, and to do it involving patients all the way. Their lives should not be compromised by their disease.
Our actions are steered by members and a committed Board. We organise our discussions through six disease specific and thematic working groups that help us channel needs and expectations to promote patient-centred healthcare and policy, but also share and learn from the national level.
EFA consistently brings the patient voice and our own evidence, arising from patient surveys and collaborative projects, to inform European-level policymaking. We participate in public consultations, organise events and hold bilateral meetings with policy makers from the EU institutions and the EU medicines, food and chemical agencies, and we are official stakeholders of the health, food and climate United Nations system organisations.
Partnership is in our nature to advance patients’ rights. We team up with global patient groups such as the Global Allergy and Airways Patient’s Platform (GAAPP) the International Alliance of Dermatology Patients Organisations (IADPO/Global Skin) and European Patients’ Forum (EPF) to raise awareness of European patient needs at the global level. We also sustain trustworthy and long-lasting relations with medical societies such as the European Respiratory Society (ERS), the European Academy of Allergy and Clinical Immunology (EAACI), and the European Academy of Dermatology and Venerology (EADV).
What’s next for EFA
As EFA looks towards the next decade advocating for patient needs, we can already see new priorities for patients emerging. The current digital transformation has revolutionised the way healthcare can be strengthened, but it is vital that digital tools are designed to improve patients’ management and do not remove the important patient-healthcare professional relationship. EFA is ensuring that as digital tools are developed, patient needs are centred throughout the process so that they are designed for and by patients.
EFA will also continue to advocate for health to be integrated into climate and environmental policy. Patients with allergy, asthma and COPD face a disproportionate share of the burden caused by climate change, as symptoms worsen and hospitalisations and even fatalities increase. As current climate legislation lags patient needs, EFA will play a key role as a stakeholder in developing guidelines and recommendations for policymakers.
Old and new patient priorities will continue to define EFA’s work and shaped by our members. If you are a patient organisation interested in joining EFA family, now 30 years old, to advocate at the European level, find out more here. If one day, and that is what we work towards, all patients with allergy, asthma and COPD will have the right for best quality of care, healthy environment and are involved in all decisions affecting their health, then EFA can complete its mission. In the meantime, let’s work together.