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Orphanet provides information on official networks of research projects, of multinational clinical trials, of patient registries and of biobanks for one particular rare disease or a group of rare diseases. Depending on the type of network, Orphanet includes networks that are officially designated by the health authorities in the country, funded at European or national level, or open to collaboration. The information displayed is the information concerning the coordinator of the network and affiliated projects.

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).


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 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. Professionals are always encouraged to consult the most recent information before making any decisions based on the information provided.

Orphanet cannot be held responsible for harmful, truncated or erroneous use of any information found in the Orphanet database.