Registries can provide valuable information for researchers and organizations developing therapies for rare diseases. Is there an overview of these registries and how can I get access to the information?
We have been adviced to look at the website of Orphanet https://www.orpha.net/.
They have compiled an overview in april 2024: https://www.orpha.net/pdfs/orphacom/cahiers/docs/GB/Rare_Disease_Registries.pdf
In addition: see the European Platform on Rare Disease Registration | EU RD Platform European Platform on Rare Disease Registration | EU RD Platform