The General Meeting of the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) was held from April 15 to April 18, 2010. I took part in the conference as an observer.
EFCCA was established in 1990 on the basis of a statute approved in the Court of Belgium as an umbrella organization. The founders were seven national organizations from Austria, Belgium, Germany, the Netherlands, Norway, Switzerland and Sweden. Currently 24 national organizations from Europe are the members of EFCCA. All the associations comprise 100 322 members, it is about 10% of all the patients with IBD. Each organization is represented by two delegates during the General Meeting of EFCCA. Current activities are managed by the Executive Committee. The eight Members of the Executive Committee are elected to a two-year term.
Marco Greco (Italy) is the Chairman for two years. EFCCA doesn’t have any other bodies even supervisory body. Every member of the board of EFCCA acts as a volunteer. The only worker is employed part-time – Luisa Avedano (Chief Executive Oficer – CEO). She works in a head office in Brussels that works from 2009. In 2000 Commission on Health Care, Commission on European Affairs and Commission on Development and Communication were established. Each of them consists of nine delegates. The Commissions deal with the matters either indicated by the Executive Committee or by themselves. Among many topics discussed during the debate was the proposal of organizing an IBD Day in 2011. Together with the organizations from Canada, the United Nations, Australia and South America it was agreed that it will be held on May 19.
Key steps leading the development of EFCCA were established:
AQUA – the transparency of actions and finances etc.;
IGNIS – lobbying only in specific matters, on European forums, that is EMEA – an agency that approves medicines, EDF – European Disability Forum etc.;
CARBON – controlling projects that are founded in order to ensure the interests of the patients.
MERCURY – an intensive communication campaign, supply in information, tabs on webpages;
PRIMAVERA – the Youth Group;
ATHENA – educational projects.
I presented information about our Association, which was received with interest. I distributed documents, which delegates wanted to keep. The materials for children arouse big interest – a cartoon Peter learns about Inflammatory Bowel Diseases and Juliet in a hospital. A few organizations asked if they could publish the cartoons in different languages. According to EFCCA there is also a Youngsters Group. The Group is organizing two meetings. The delegates of Poland were invited this year.
A project Life and IBD is carried out together with a pharmaceutical company Abbott. There is a web-page www.lifeandibd.org that belongs to and is managed by EFCCA. The web-page should be treated as a database for the national organizations. These are not guidelines but materials, which can be used.
In 2008 EFCCA established an IBD Research Foundation. Main aim of the Foundation is to raise money and to distribute grants to the researchers working on IBD. After two years the Foundation has poor achievements. The organization raised only about 3000 € and is planning to distribute micro-grants for young researchers in the future. The Foundation has a web – page www.ibdresearch.org.
Major influence on the effects of the Foundation’s work had the lack of sponsors in the time of a global crisis and the fact that some national organizations have their own foundations and they are not interested in collaboration. The Foundation wants to have autonomy while choosing projects concerning financial support and does not want to bow to pharmaceutical companies. On the other hand, in that situation the companies are not eager to sponsor the Foundation.
Project C2COnnect C2-Cd+CU; Connect = Communication.
The project consists of two modules: Toilet Card and Research Survey. The project is run in collaboration with Abbot company. In relation to Research Survey the delegates emphasized the necessity of ensuring protection of personal data while contacting with pharmaceutical companies. Each stage of the project should be controlled. According to the European law pharmaceutical company is not allowed to accumulate, keep or analyze the data of people taking part in research. That is why collaboration with patients’ organizations is so important for them. The Executive Committee asked the representatives to become involved in the work on specific projects. Even if the organizations have experts who are not the delegates, they can work on projects. Six key projects can be expanded to sub-projects. The Executive Committee is going to ask the national organizations to indicate people for specific projects.
Translation: Katarzyna Imielska