|Project title||„Lifebelt” Information Centre for the Rare Disease Patients|
|Thematic area||Provision of welfare and basic service to vulnerable groups|
|Name of the organization||Hungarian Federation of People with Rare and Congenital Diseases (HUFERDIS)|
|Postal address||1022 Budapest, Pajzs utca 5.|
|Project manager||Dr. Pogány Gábor|
|Project timeframe||March 1st, 2015 - April 30th, 2016|
|Amount of support||49,781 €|
About 800.000 Hungarian rare disease patients face the lack of diagnosis and care. Without correct information the patients are discriminated and isolated while they need complex medical, social and psychological services. The aim of the project was to establish an Information Centre for the rare disease (RD) patients. The project improves the quality of life of the families, enlarges their and the professionals’ acquaintances, and empowers their organizations. The organizers will operate a help-line, prepare information brochures, organize professional office hours and trainings, prepare on-line training materials, an information database, implement complex patient management, and operate a fellow sufferer searching service with the necessary infrastructure. The target groups are the Hungarian RD patients, NGOs, professionals and civil society. Partners are the Norwegian Frambu, EURORDIS and University of Debrecen. The results were disseminated at a closing conference and through reports.