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Orphanet provides information on :

  • - Patient registries: systematic collections of clinical data for clinical research explicitly focused on a particular rare disease or group of diseases governed by an identified body. Single patient registries or networks of patient registries (national or international) must be based in one of the countries in the Orphanet consortium. Registries outside the Orphanet consortium countries can be considered if they fulfill Orphanet's inclusion criteria;
  • - Variant databases: databases of variants described as causative for a particular rare disease or group of diseases, and having an online interface, governed by an identified body;
  • - Biobanks: any kind of systematic, open-for-collaboration register of biological specimen for clinical research with a clear orientation towards the field of rare diseases.

Enter your requested disease name or gene name/symbol to access this information.

The results can be sorted either geographically (by country, region and city, in alphabetical order), or by specificity (from those more focused on a particular disease to those specialised in a group of diseases including the disease you were looking for).

You can access related Orphanet datasets in an aggregated format through Orphadata after signature of a Data Transfer Agreement/Service Contract.


The data collection takes place in Orphanet consortium countries and is currently ongoing. Research related resources (research projects, clinical trials, patient registries, biobanks and Variant databases) are also collected and registered in Orphanet database if they are funded by a member agency of the International Rare Diseases Research Consortium (IRDiRC, list of members available here) located in a country for which there is no Orphanet national team.

Information in Orphanet is not intended to replace professional health care. Orphanet cannot be held responsible for harmful, truncated or erroneous use of any information found in the Orphanet database.