The various patient organisations for rare diseases have been involved in this project from the outset.
The umbrella organisation RaDiOrg serves as a representative on the supervisory committee that takes all important decisions concerning the Central Registry of Rare Diseases, and represents patients with rare diseases in Belgium during this process.
The project was presented at a general meeting of RaDiOrg. The umbrella organisations VPP, LUSS and RaDiOrg together with other patient organisations had the opportunity to ask questions and make comments. For example, these comments led to some changes to the first version of the leaflet used to inform patients about the registry. They were also given a say in the discussion about the need, advantages and disadvantages of asking the patient to give permission for inclusion in the registry and for participation in clinical studies.
If you are a patient and you have questions about the registry, you can contact your physician. However, the patient organisations will also be able to answer your questions. If you have any questions, you can get in touch with the contact person for the patient organisation for your disease, or with the umbrella organisation RaDiOrg. On the website of RaDiOrg you can find a list of the different patient organisations (link to the list in NL or in FR) or you can find the patient organisations for your rare disease in Orphanet.