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Description
The aim of this project is to prepare a feasibility study for the establishment of a comprehensive Educational Centre for rare diseases in the Czech Republic. Such a center - which will provide holistic and advisory services to patients, their families and rare disease experts - does not exist. RD patients face a lack of practical information that would help them better manage their lives with RD. A lack of understanding and prejudices in their surroundings often leads to isolation, which makes the need for mutual support all the greater.
Building such a centre is the vision of Rare Diseases Czech Republic. It is in line with the National Strategy for RD (2010-2020) and EURORDIS’ recommendations in the Rare 2030 project.
It will provide services to improve quality of life and teach how to live with a diagnosis. The centre will become a place for education, meetings and shared experiences within and across diagnoses, and in doing so, to help bridge the handicap of rarity.
The project''s goal is to develop a comprehensive expert study of such a centre and to verify this intention in practice. The target group of this project are patients with rare diseases and their families, care providers, and experts in the field of rare diseases. We will verify the resulting concept by implementing pilot courses which will help to define the final feasibility study for the project.
Our project partner and role model for building the centre is the Norwegian organization Frambu (https://frambu.no), which for decades has developed and shared its RD experience to patients, their families and the professional public. At Frambu’s education centre, children, young people, adults, and their families learn how to live high-quality lives with their disease. Cooperation with Frambu as a partner on this project is both important and crucial for us. The partner brings invaluable long-term experience with operating such a centre.