About EFCCA

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?

Networking

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. 

Awareness raising

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.

Advocacy

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.

Empowerment

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.

Solidarity

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.

EFCCA Values

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

 

 
 
EFCCA Vice-President: Salvo LEONE
CEO of the Italian IBD Association 
 

 
 
EFCCA Honorary Secretary: Ciara DROHAN
Member of the Irish Society for Colitis and Crohns Disease ( ISCC)
 

 
 
EFCCA Treasurer: Marko Perovic
Member of the Serbian IBD association, UKUKS
 
 

 
 
EFCCA Board member: Magda Sajak
Member of the Polish IBD association, J-elita

 

 

 
EFCCA Board member: Natasa Theodosiou
Board member of the Cyprus IBD association, CYCCA
 
 

EFCCA staff

CEO: Luisa AVEDANO

E-mail: luisa.avedano@efcca.org


Head of International Relations, Strategic Development and Communications: Isabella HAAF

E-mail: bella.haaf@efcca.org

 


Policy Officer: Martina Jovic

E-mail: martina.jovic@efcca.org

 


 

 

Scientific advisor: Sanna Lonnfors

E-mail: sanna.lonnfors@efcca.org

 

EFCCA History

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)