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This screen gives access to list of support groups through a query by disease name. You may specify the country by selecting it among a list, but this is optional.
Put your requested disease name in the query zone and click on OK to validate.
You can use truncated names. A list of all diseases matching your query will appear. Select the disease of interest to you.

  • Search by patient organisation name: This screen gives access to list of support groups matching a name. Put the name of the organisation you are looking for in the query zone and click on OK to validate. You may specify the country by selecting it among a list, but this is optional.
  • Search by country: This screen gives access to lists of support groups by country. They are classified by alphabetical order of their name. Click on a country. If you want to have details on an organisation, click on its name.
    In some countries the list may be very long. It will take some time before it appears if you have a slow connection. To search for a specific organisation, it is easier to query by patient organisation name.

The patient organisations listed in Orphanet are the patient organisations registered in Europe and surrounding countries whose activity is targeted at a rare disease or a group of rare diseases. The information which is displayed is the information provided by the head of the organisation.


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, thus the database cannot be regarded as comprehensive yet. If no patient organisation is listed for a disease or in a country, it may be that no patient organisation is available, but it is also possible that the patient organisation has 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.

About patient organisations in Europe