Educational Centre for Rare Diseases
Published
| Region | National coverage |
|---|---|
| Title of the Programme | Health |
| Title of the Project | Educational Centre for Rare Diseases |
| Number of the Project | ZD-MGS3-042 |
| Project Promoter | Rare Diseases Czech Republic |
| Project Partner from Donor State | Frambu Foundation (Norway) |
| Czech Partner | N/A |
| Status | Estimated project duration: 1/2022 – 12/2023 |
| More Information | Target group: People with disabilities Web pages: https://www.vzacna-onemocneni.cz
|
| Total Eligible Costs | 143 860 EUR |
| Grant | 143 860 EUR (100 %) |
Summary:
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 centre - which will provide holistic and advisory services to patients, their families and rare disease experts - does not exist in the country. Rare disease patients face a lack of practical information that would help them better manage their lives. 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 the Rare Diseases Czech Republic organisation.
The centre will provide services to improve quality of life and teach how to live with a diagnosis. It 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. We will verify the resulting concept by implementing pilot courses which will help to define the final feasibility study for the project.
The project partner is the Norwegian organization Frambu, which has been developing and sharing its RD experience with patients, their families and the professional public for decades. The partner brings invaluable long-term experience with operating such a centre.