The European Federation of Crohn's & Ulcerative Colitis Associations is an umbrella organisation representing 34 national patient associations. EFCCA aims to improve the quality of life for people with IBD and give them a louder voice and higher visibility across Europe and beyond.
Its headquarter is based in Brussels and has three staff members that work alongside the Executive Board which consists of 6 elected representatives from its member associations.
What do we do?
We encourage and facilitate the exchange of information and the promotion of international activities. We collaborate with other umbrella associations such as the European Crohn’s and Colitis Organisation (ECCO) representing the medical profession, the United European Gastroenterologists Federation (UEGF), the European Patients’ Forum (EPF) and many other networks and organisations working in the health related field.
Through World IBD Day and other initiatives we want to raise awareness about IBD as there is still little public understanding of the pain and chronic suffering with which IBD patients courageously cope every day of their lives.
We carry out advocacy work with the EU institutions and international organisations such as the WHO to ensure that patients´ concerns are included in the decision making process for policies and other related health initiatives.
Through the exchange of best practise and capacity building activities such as educational seminars, thematic workshops and policy initiatives we support our members in their work and mission at national level.
We assist in the establishment of new associations in countries where they do not yet exist offering our support and advice. Through World IBD Day and other activities and events we bring the IBD community together in our common fight against IBD.
EFCCA Mission and Values
EFCCA’s main objective is to improve the well-being of people with IBD of all ages, diagnosed with Inflammatory Bowel Disease (IBD) by:
Encouraging and facilitating the exchange of information and the promotion of cross-frontier activities, including knowledge exchange with Crohn’s and colitis organisations in other parts of the world.
Assisting in establishing new associations in European countries where they do not exist yet.
Working actively at the European level with and for the EFCCA member associations to improve the quality of life and the quality of care for those with IBD of all ages, their partners, families and friends. Offer them support and information. Cooperating with doctors, health professionals and other related organisations to reach these aims.
Raising public awareness both of IBD, the European patients concerns and EFCCA. Also broaching the issue of the taboo which surrounds bowel disease.
Encouraging scientific, social and other research into the causes, diagnosis and treatment of inflammatory bowel disease.
Encouraging patients and their families to travel and to meet with people from EFCCA member associations and other nationalities, through the provision of relevant information and advice.
Promoting and foster equality of opportunity in all aspects of our work.
Working with patients, doctors and nurses in European countries where no national Crohn’s and colitis patient groups exist.
A preliminary remark: EFCCA is the voice of patients suffering from IBD, nevertheless we use to name ourselves people with IBD, being IBD not to be taken as the whole of our condition, but a part, sometimes predominant, which affects our daily life, our family’s and relatives’ ones.
To give a louder voice and a higher visibility to people with IBD in Europe
To improve the well-being of people with IBD of all ages
To include health policy and healthcare issues within the wider spectrum of social, economic, cultural and environmental policies under the WHO and EC label “Health in all policies”
To reduce health inequalities
To empower patients’ associations and include their position in the decision making processes both at national and EU level
To enlarge networking at worldwide level
To work on a basis of full transparency and independency
To develop position and policy papers representing people with IBD needs and priorities
To design and realise sensibilisation campaigns and advocacy plans in collaboration with the European Commission, the European Parliament, the WHO
To strengthen the links and the collaboration among the National Associations
EFCCA Governing Board
EFCCA Chairman: Martin Kojinkov
CEO: Luisa AVEDANO
Head of International Relations, Strategic Development and Communications: Isabella HAAF
Policy Officer: Martina Jovic
Scientific advisor: Sanna Lonnfors
Following the identification of IBD as a recognisable chronic illness, specific self-help groups began to appear cross Europe. By the mid 1980s, most of the groups which now constitute the European National Associations for Crohn's and Colitis patients had been formed. Further development of these organisations has reflected the growth of IBD diagnosis, the increasing visibility of the benefits of self-help associations and their increasing roles.
In the beginning of the 90s a small group of IBD associations from the Netherlands, UK, Germany, Luxembourg and Belgium got together with the idea of setting up a European Federation of IBD associations. The aim then was to encouragethe exchange of information and the promotion of international activities, including knowledge exchange with Crohn’s and Colitis organisations in other parts of the world and to assist in establishing new associations in European countries where they did not exist yet.
EFCCA Official documents
Statute (Pdf - 191.35 KB)
EFCCA Commitment to transparency (Pdf - 555,5 KB)