This screen gives access to lists of umbrella patient organisations and federations through a query by disease name. You may specify the country by selecting it from the list, but this is optional.
Enter your requested disease name in the query zone and click OK to validate.
You may use truncated names.
A list of all diseases matching your query will appear. Select the disease of interest to you.
Other search options: you have also the possibility of searching by network name.
The networks of patient organisations listed in Orphanet are the umbrella organisations and federations with members registered in Europe and surrounding countries. The information which is displayed is the information provided by the coordinator of the network. For national networks, their member organisations are not listed.
It is recommended not to ask for very large lists as the number of possible results is voluntarily limited to protect the database from abuses.
In case you wish to obtain large datasets, please ask Orphanet to do the data extraction for you.
Data collection takes place in European and surrounding countries and is currently ongoing. The database cannot yet be regarded as comprehensive. If a network is not listed in a region or a country, it may not exist or has not been identified yet or the network may have refused to be listed.
Orphanet aims to provide rare disease information to healthcare professionals, patients, and their relatives, in order to contribute improving the diagnosis, care and treatment of these diseases. 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.