ABOUT US

IMPROVING THE LIFE OF

PEOPLE WITH IBD

 

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WHO WE ARE?

 

The European Federation of Crohn's & Ulcerative Colitis Associations (EFCCA) represents 46 national Crohn’s and Ulcerative Colitis (collectively known as Inflammatory Bowel Disease or IBD) patient associations.

We are an organisation of people united in our commitment to improve the life of over 10 million people living with IBD worldwide (3.4 million in Europe alone) and to give them a louder voice and more visibility.

 

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.

 

Mission 

Our mission is to improve the life of people with Crohn’s disease and Ulcerative Colitis collectively referred to as Inflammatory Bowel Disease (IBD).

 

Vision 

Our vision is to find a cure for Inflammatory Bowel Disease (IBD).

 

Our Governing Board

 

Chairperson: Salvo Leone
CEO of the Italian
IBD Patient Association
(AMICI Onlus)
 
 

Honorary Secretary and
Vice President: Ciara Drohan
Member of the Irish Society for
Colitis and Crohns Disease (ISCC)
 

 

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Treasurer: Marko Perovic
Member of the Serbian IBD Association (UKUKS)
 

Board member: Magdalena Sajak-Szczerba
Secretary of the Board of the Polish IBD Association (Towarzystwo "J-elita")
 

 

 

Our Staff

 

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Luisa Avedano 
CEO 
luisa.avedano@efcca.org

 

 

 

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Isabella Haaf
Head of Communications
Coordinator World IBD Day
 
 
 

 

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Maria Stella De Rocchis
European Project Officer
mariastella.derocchis@efcca.org

 

Tatiana Negurita
Finance Project Officer

 

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Francesc Esparza-Pagès
Project/Academy Assistant
francesc.esparza@efcca.org

Roberto Saldana
Innovation and Patient Engagement Coordinator
roberto.saldana@efcca.org

 

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Ivan Fomin
Financial Assistant
ivan.fomin@efcca.org

Laura Cervetto
Communication Assistant
laura.cervetto@efcca.org

 

 

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Vasiliki Vakouftsi
EFCCA Youth Coordinator
vaso.vakoufti@efcca.org​​​​​​

Maria Fernanda Salinas Escoto
EU Project Assistant
fernanda.salinas@efcca.org

 

IT Team: 4 professionals

 

EFCCA History

Following the identification of IBD as a recognisable chronic illness, specific self-help groups began to appear across 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. 

 

Official documents

 

Statutes

Internal Regulations

EFCCA Commitment to transparency 

EFCCA Strategy-Plan-2023-27 .pdf  

Blueprintofadream.pdf

 

Annual Reports

EFCCA Annual Report 2023

EFCCA Annual Report 2022

EFCCA Annual Report 2021

EFCCA Annual Report 2020

EFCCA Annual Report 2019

EFCCA Annual Report 2018

EFCCA Annual Report 2017

 

For previous reports, please contact the EFCCA office.