Choose an area:

Educational Centre for Rare Diseases

Department 58 – International Relations
Department 58 – International Relations

Published

Project
Region National coverage
Title of the ProgrammeHealth
Title of the ProjectEducational Centre for Rare Diseases
Number of the ProjectZD-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
https://www.facebook.com/CAVO.vzacna.onemocneni/

 

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.