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Orphanet provides information on national, European or international alliances and federations dedicated to one particular rare disease or to a group of rare diseases. The information displayed is the information concerning the coordinator of the alliance/federation and affiliated patient organisations.

Enter your requested disease name 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.


Alliances and federations should be active, responsive, provide support and information to patients, have a legal status according to the country’s laws and have a designated head and /or a contact person.

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