Annual Report 2018

Do you know what severe means for people with allergy and airways diseases? It is severe when you are in and out of hospital due to asthma and you do not know what is wrong. It is severe when you live like this for twenty years before you are empowered to take control of your quality of life with asthma. It is severe when you have to scratch until blood, and are not sure if you can face life with atopic eczema. 2018 was a severe year for EFA, together with Members we shed light into the severity of allergy and asthma with patient evidence and awareness activities.


Through the Severely Asthma! Project, EFA in collaboration with Members shared the testimonies of six severe asthma patients across Europe to improve the understanding of what it means to live with limited lung function. Through the launch of our report “Itching for Life: Quality of Life and costs for people with severe atopic eczema in Europe” and photo exhibition, we encapsulated the quality of life in severe atopic eczema, portraying the beautiful human beings living Atopical Lives in six countries.


In our Active Patients Access Care Survey, we asked asthma and chronic obstructive pulmonary disease (COPD) patients from seven countries about their care, diagnosis, involvement in their care and access to prevention, to create Patient Reported Evidence about the current situation and real disease burden of patients. The results will underpin a European campaign to be initiated in 2019 to build leadership for change on allergies and airways diseases.


I am truly proud of the trust and dialogue opportunities that materialised last year. In 2018, our federation was recognised at the highest levels of regional policy-making: we were re-elected to the European Medicines Agency Patients and Consumers Working Party (PCWP); the 68th session of the World Health Organisation Regional Committee for Europe accredited EFA to initiate official relations as a non-state actor; and we signed a Memorandum of Understanding with the European Academy of Allergy and Clinical Immunology (EAACI), our first bilateral agreement formalising a partnership.


While living with severe chronic disease is tough, and the healthcare system and prevention policies still need to truly incorporate supporting quality of life, the strength and resilience of ‘severe’ patients remind us about our love to life and the need to be together. This is what EFA is all about for me: the permanent opportunity to share, build evidence and take action from a patient perspective, a unique federation of 42 national patient associations, with the patients and families they represent. We altogether form a solid organisation that lead towards actions that improve our lives.


Thank you to our Members and all the volunteer patients who shared their story, lent their expertise or participated in our surveys, sharing our joint vision, and thanks to our key partners acknowledged in this report for believing in it. Thanks to our sustainable funding partners and DG Research and Innovation for supporting our work.


Europe, do more, not less for health!


Severely, strong,


Mikaela Odemyr


EFA President