Description
"About 800000 Hungarian rare disease patient face with the lack of diagnosis and care. Without correct information the patients are discriminated and isolated while they need complex medical, social and psychological services. To establish a lack covering Information Centre for the rare disease (RD) patients. Our project improves the quality of life of the families, enlarge their and the professionals’ acquaintances, and empowers their organizations. We would operate a help-line, prepare information brochures, organize professional office hours and trainings, prepare on-line training materials, information data base, implement complex patient management, and operate fellow sufferer searching service with the necessary infrastructure. Our target groups are the Hungarian RD patients, NGO-s, professionals and the civil society.Partners are Norwegian Frambu, EURORDIS and Univ. of Debrecen. We disseminate our results on a closing conference and through reports."
Summary of project results
This project was needed because about 800,000 people are living with rare diseases in Hungary, and they often don’t get the correct diagnosis, and even if they do, probably they don’t receive the correct health care, social care services or educational information. The Lifebelt Helpline and Information Centre is dedicated to help with all types of information for the patients with rare diseases and their families and experts. The Lifebelt Centre was built up and was maintained for more than a year by the Norwegian Grant. With a well-trained and professional staff the center has created a complex database, a website (
http://mentoov.rirosz.hu), a helpline service, and built up communication channels for the affected people and for professionals, too. It achieved all of their plans. The center received more than 400 desperate calls during the fourteen months. Concidering this fact, the helpline service is definitely needed, therefore we do would like to continue operating the service.
Summary of bilateral results