::Help
This screen gives access to lists of expert clinics through a query by disease name or by country: you must specify either the disease or the country. You may specify the type of clinics (clinical management or genetic counselling; adults or children; or whether you only want centres of reference) by clicking on the corresponding buttons; 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.
The clinics listed in Orphanet are those considered to offer a specific expertise on a rare disease or a group of rare diseases. They match the following criteria: adapted technical platform, multidisciplinary team when necessary and clinical research expertise. Only those located in Europe and surrounding countries are listed. The level of expertise of the clinics varies from one country to another, depending on the health care system and on the size of the country.
Two types of clinics are listed: the medical management clinics and the genetic counselling clinics, as many rare diseases are genetically determined. It is specified whether they are adapted for children only or for adults only.
When a clinic is officially considered in its country as a centre of reference, it is indicated; however, official centres of reference exist in only a very few European countries.
Clinicians must apply to have their clinic listed. They must provide evidence of their particular expertise to be considered. The applications are reviewed by the members of the Orphanet scientific advisory board of the country in charge of the relevant medical specialty. The data are updated every year.
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.
::Warning
Data collection takes place in European and surrounding countries and is currently ongoing. The database cannot yet be regarded as comprehensive. If an expert clinic is not listed in a region or a country, it may not have been identified or the clinics may have refused to be listed. It is also possible that an expert clinic has not yet been set up for some rare diseases.
By no means are these clinics the only places where patients can be adequately diagnosed and treated. There are other places for expert advice when needed.
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.
