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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.
Summary of project results
The intention of the project was to develop a feasibility study for the establishment of a comprehensive Rare Diseases Education Centre in the Czech Republic. There is a lack of a centre that would provide comprehensive and consultative services to patients, their families and professionals in the field of rare diseases in the Czech Republic. Rare disease patients face a lack of practical information to help them better manage life with a rare disease. They are at risk of isolation due to misunderstanding and prejudice from their surroundings, which makes them all the more in need of peer support - meeting people with a similar fate. Building such a centre to help address these gaps is the long-term vision of the Czech Association for Rare Diseases. It is in line with the National Strategy for Rare Diseases (2010- 2020) and the recommendations of EURORDIS within the Rare 2030 project. During the implementation of the project, we encountered several events that had to be addressed with change requests. Mostly these were budget transfers which did not affect the final budget of the whole project. One of the other changes was a planned face-to-face meeting with a partner in Norway, which eventually took place in Sweden at a meeting of representatives of Rare Disease Support Centres from different European countries within the RareResourcesNet organisation. We consider this change to be a positive one, as this meeting was an exceptional opportunity to learn about how other centres in different European countries also function and the difficulties they face in functioning.
The aim of the project was to develop a comprehensive expert study of such a centre and to verify this plan in practice. The target group of the project was patients with rare diseases and their families, caregivers and professionals in the field of rare diseases. The emerging concept was validated through the implementation of pilot courses, which helped to define the final feasibility study of the project. The project partner and our model for building the centre is Frambu, Norway (https://frambu.no), which has been developing and transferring its expertise in rare diseases to patients, their families and the professional community for decades. In their educational centre they teach children, young people, adults and their families to live a quality life with their disease. The cooperation with our partner Frambu Foundation on this project was very important and crucial for us. The partner brought invaluable years of experience in running such a centre. The following activities and their outcomes were implemented in the project:
1. Project management
2. Needs analysis
- Report Assumptions and requirements for the establishment of the centre (workshop with patients and patient organisations on 10 November 2022 - 15 participants in total)
3. Concept development
- Concept document for the Education Centre
- online conferences (5 June 2023 - 5 people from the partner organisation, 3 experts and 4 people from CAVO participated)
4. Proof of concept and pilot courses
- Qualitative survey
- pilot courses ("Rare Indian Summer" 18 - 23 September 2023 in Pluhova Žďár, a course focused on meeting families, sharing experiences and personal meetings with experts, a total of 22 participants and the course "Meeting patients with rare diseases" 26 - 29 October 2023. 2023 in Chocerady, a stay of adult patients and their partners or carers, the aim was to enable patients and their relatives to discuss with selected experts various aspects of living with the disease and also to share their experiences with other people in a similar life situation, total 9 participants)
5. Feasibility study
- Feasibility study document (several meetings were held with the project partner as part of the FS development)
6. Project publicity
- Publicity on the CAVO website
- press release (one press release deals with the educational stays and the second one with the educational centre and its establishment in the Czech Republic)
- press konference (24 April 2024 in Prague, 17 persons in total, 2 of them from the partner organisation)
The purpose of the project was to support the development of activities and services of patient organizations by creating a feasibility study for the implementation and establishment of the Rare Disease Education Center. The aim of the feasibility study was to test the knowledge gained and the concept of such a centre in practice. The feasibility study also included the development of a plan for operation, functioning and a timetable for establishment.
This purpose was undoubtedly fully achieved.
THE CONTRIBUTION OF THE PROJECT IN CONTEXT
1) The project contributed to the overall improvement of services provided by patient organisations - our members (patient organisations and individual members) had the opportunity to participate in defining the future services of the Education Centre. They were involved in research, workshops and participated in a qualitative survey. The entire project process was discussed at internal monthly CAVO meetings, which are open to all members. We initiated their activities and looked for ways to involve them together.
The project contributed to increasing the skills of patients , with 31 people from the target group attending the training courses and 11 member patient organisations were involved in the project. In the project we implemented 2 workshops for patient organisations and 1 workshop for professionals. We managed to implement 2 pilot educational courses. With our partner we implemented 4 online seminars/conferences, 4 face-to-face consultation meetings. We implemented a press conference for the media together with the project partner. In the project we realized dozens of face-to-face meetings and online regular meetings of the so-called core team which was supplemented by experts according to the individual phases of the project.
2) The project has had an impact on raising awareness of the activities of patient organisations - we have continuously published the progress of the project publicly, thus informing the general and professional public about the activities of patient organisations for rare diseases. The professional prestige of patient organisations (and consequently of all patient organisations) has increased as CAVO is the main initiator of the establishment of the Rare Disease Education Centre.
CONTRIBUTION TO STRENGTHENING BILATERAL RELATIONS
The cooperation between Frambu and CAVO has always been based on fairness, expertise, enthusiasm and human understanding. We have always greatly appreciated Frambu''s willingness to share its know-how, which we also see as a systemic approach to dealing with rare diseases in Norway. The establishment of a similar centre in the Czech Republic would further deepen our cooperation. The implementation of the project will bring this goal of establishing the centre closer and deepen the mutual relations.
Summary of bilateral 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.