Educational Centre for Rare Diseases

About this project

<p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p> <p>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.</p>

Bilateral cooperation results

We chose the educational center for rare diseases Frambu from Norway as our partner based on several years of personal experience. This is the oldest center focusing on rare diseases in Europe, which has extensive experience. Its representatives consulted on the establishment of several similar centers in Europe. The cooperation was of great benefit to us. We were able to draw on the experience of the organization and consult on the issue with people who have specific experience with the individual services provided. The cooperation in creating and providing the so-called educational stays, which will be the core service of the future center in the Czech Republic, was invaluable. We had the opportunity to consult on-line and by telephone about the service settings, and the personal participation of Frambu representatives at the pilot educational stay in the autumn of 2023 in the Czech Republic was key. For communication with our team, Frambu designated a contact person, a manager, who coordinated individual inquiries on the partner's side. The cooperation in finalizing the Feasibility Study was very valuable. Comments and recommendations based on real practice were invaluable, especially for setting the parameters and time requirements for providing individual services (educational stays, consultations, managing the helpline, webinars, etc.). Very important for the future functioning of the education center was the explanation of the principle and role of the education center website, which is not only an information source, but also a resource database for each rare disease. The final joint workshop in Prague (April 2024) was a valuable experience and confirmed to us how significant and important sharing experiences from Norway was for us. They are the basis for us, as we were able to adapt them to Czech conditions and assumptions. We would very much like to continue our cooperation with our partner Frambu after the end of the project in launching individual services of the education center and especially in creating the structure of the knowledge database and website.

Project partners

• Frambu Resource Center for Rare Disorders Donor project partner· Norway