The European Federation of Crohn's & Ulcerative Colitis Associations is an umbrella organisation representing 33 national patients’ associations. EFCCA aims to work to improve 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?
- Exchange of information
We encourage and facilitate the exchange of information and the promotion of cross-frontier activities. Once a year EFCCA members meet during the General Assembly where they discuss work priorities and elect the Executive Board.
In order to boost a stronger link with national associations and to achieve EFCCA’s goals in a more effective way we are also organising thematic workshops for our members. Last year (November 2011) we organised a training workshop, which took place in Brussels and focused on team building exercises, practical media training and EU affairs. It also included a visit to the European Parliament and provided an excellent opportunity for our members to improve their media relation skills, to learn more about the EU institutions and to find out about the day to day running of the EFCCA office.
We also collaborate with other European umbrella associations such as the European Patients’ Forum (EPF), European Crohn’s and Colitis Organisation (ECCO) representing the medical profession, the United European Gastroenterologists Federation (UEGF), the European Disability Forum (EDF), Health First Europe and many other networks and organisations working in the health related field. For the last three years we have collaborated with other sister organisations all over the world to coordinate activities around IBD World Day.
- Public awareness raising and empowering patients’ association
We carry out activities aimed at raising public awareness of IBD in general, the European patients’ concerns and EFCCA as well as empowering patients’ associations and including them in the decision making processes both at national and EU level.
Most of our activities target the European Commission, the European Parliament and the WHO as we want to ensure that health policy and health-care issues are included within the wider spectrum of social, economic, cultural and environmental policies. As such we are also promoting health equalities for all.
During our IBD World Day 2011 campaign a small EFCCA delegation met with Mrs Darmanin the head of the Cabinet of the European Commissioner Dali (DG Health and Consumers’ protection). It was a great opportunity for EFCCA to present its mission and goals and to pave the way for stronger collaboration with the European Commission.
In November last year we also extended our activities to the European Parliament and set up meetings with Members of the European Parliament. As a direct outcome, MEP Sergio Gaetano Cofferati will support an action, on behalf of EFCCA, aimed to gather attention on the difficulties that IBD patients have to face and, in particular on the lack of harmonized recognition, across the 27 European Member States, of the rights and needs of people living with IBD. Our World IBD Day event 2012 took place in the European Parliament within this context.
This year we organised a very successful IBD awareness raising press conference which took place in Barcelona on 15 February 2012. It gathered over 80 journalists covering not only European but also worldwide media organisations. During the press conference EFCCA presented the results of the pan‐European IMPACT patient survey assessing the perspectives of IBD patients about their disease and its impact on their lives, relationships and careers. Over 4990 IBD patients participated in the survey answering 52 questions around A) IBD experience B) Health care C) Personal impact of IBD D) Impact on work and E) Overall Life IMPACT and the role of patient organizations. The press conference was co-organised by EFCCA and ECCO under the heading “Join the fight against IBD”.
- Assist in establishing new associations
Another mission of EFCCA is to assist in the establishment of new associations in European countries where they do not exist yet. During last years Annual General Assembly (2011) for example we welcomed three new members from Poland, Czech Republic and Serbia. This year we have welcomed two associate members, namel the Israel Foundation for Crohn’s Disease and Ulcerative Colitis and Fundación Mas Vida de Crohn & Colitis Ulcerosa (Argentina).
This year we are in discussions with patients from Bulgaria who are keen to set up a Bulgarian Crohn’s and Colitis association and to join the European network.
- Encouraging scientiﬁc, social and other research into the causes, diagnosis and treatment of inﬂammatory bowel disease
This is an important mission of EFCCA and this year for the first time we are planning to organise a World Symposium of IBD research that is directly or indirectly funded through patient associations. We are still in the planning stage but more information will be availbe from our office soon.
These are just a few example of the wide range of activities that we carry out for our members at the European level. Even though European work might not be so visible at the national level, it is nevertheless important work and we very much rely on the active participation of our members in order to achieve our aims.
In October this year we will be organising the first World Symposium on IBD research funded or promoted by IBD patient organisations worldwide.
- EFCCA Statute and By-laws
EFCCA Statute = under revision= [Click here]
EFCCA By-laws 2003 = under revision= [Click Here]