The European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) is a not-for-profit international organization established under the Belgian law in 1989. It is an umbrella organisation representing 39 IBD patient 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. 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.
Main tasks in the project
EFCCA’s main task in the project is to provide the perspective of the end users i.e. the IBD patient community.
EFCCA will be reviewing and providing feedback and suggestions to the digital endpoints identified in this project in order to ensure that first they are described in a patient friendly language and that they actually make sense to the patient. We will also provide input to the design of the feasibility of the proposed activities to maximise recruitment potential, minimise attrition and intrusion to the patient’s daily life taking also into consideration issues such as data protection and privacy which are very important to our organization.
They will further provide expertise on how to best engage the IBD patient community making sure that a wide spectrum of patients (age, gender, background) are included in the study. Finally, EFCCA will advise on dissemination of the findings from the proposal to the patient users and general public.