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Data collection and registration of patient organisations in Orphanet
Orphanet provides information on patient organisations, umbrella organisations and alliances dedicated to one particular rare disease or to a group of rare diseases.
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.
Patient organisations 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.
The patient organisations included in Orphanet are either national, European or international patient organisations based in a country belonging to the Orphanet consortium. Regional patient organisations are collected only if there is no national equivalent. Organisations not based in an Orphanet country can be considered for inclusion if they are an alliance and/or are members of EURORDIS AND they have legal status.
Data collection takes place in Orphanet consortium countries and is currently ongoing. Thus the database cannot be regarded as comprehensive. If a patient organisation, umbrella organisation or alliance is not listed in a region or a country, it may not have been identified or may have refused to be listed.
Orphanet cannot be held responsible for harmful, truncated or erroneous use of any information found in the Orphanet database.