European Federation of Crohn’s and Ulcerative Colitis Associations
The European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) is a not-for-profit international organisation established under the Belgian law in 1989. It is an umbrella organisation representing 39 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. It does this by encouraging and facilitating the exchange of information and the promotion of international activities and by raising public awareness of IBD, the European patients’ concerns and EFCCA with the European Commission, the European Parliament, the WHO and public at large. EFCCA works actively at the European and international level with and for the EFCCA member associations in order to improve the quality of life and the quality of care for those with IBD, their partners, families, and friends. EFCCA encourages scientific, social and other research into the causes, diagnosis and treatment of IBD and ensures that health policy and healthcare issues are included within the wider spectrum of social, economic, cultural and environmental policies under the WHO and EC label “Health in all policies”. It promotes health equalities for all and empowers patients’ associations including them in the decision-making processes both at national and EU level. It also actively cooperates with doctors, health professionals and other related organisations (the European Crohn´s and Colitis Organisation, United European Gastroenterologists etc.) to reach its aims.
Role within ImmUniverse
Work package 1: Management and dissemination Task 1.5 - creation and management of a Patient Input Platform (PIP) at the beginning of the project (in partnership with EFA). The PIP is composed of expert patients with inflammatory bowel disease and with atopic dermatitis. The patients will act as a ‘real life’ sounding board of the research and its interpretation, ethics and patient communication in and outside the project. The working groups will be consulted at least once a year (by means of a teleconference) on issues related to the project which are considered relevant for the patients. When relevant, EFCCA and will share project material and deliverables with working groups. At the same time one member of each working group will attend the yearly partner meeting and will provide the patient perspective to the rest of the consortium. Task 1.6 - EFCCA will communicate about the project and its outcomes through its network and in collaboration with EFA and EPF. Specific dissemination products (video or online leaflet) targeted for patients will be produced to highlight the outcomes of the project.
EFCCA communication and dissemination activities include the publication of a presentation article in the EFCCA magazine and website immediately after the project kick off. The design of ad hoc material to be delivered following the project timeline in coordination with the other patient organisations involved to inform the IBD patient community. Further information material reporting the state of the art of the project development as well as the final outcomes is foreseen. All materials will be “translated” into a patient friendly language to reach out to the wider patient community in a coordinated way with the other involved patient associations. Regular news on the monthly internal EFCCA newsletter addressed only to EFCCA ‘s members will be published reporting to national patient associations and EFCCA delegates. Particular attention will paid to the language since it is important to clearly communicate interim and final outcomes to show the kind of benefit a patient could get from the successful implementation of the project. Global awareness days like World IBD Day (19 May) may also contribute to disseminate the project objectives and results.