This screen gives access to lists of centres of expertise through a query by disease name or by country: you must specify either the disease or the country. You may specify the type of centres of expertise (clinical management or genetic counselling; for adults or children; or whether you only want to view designated centres of expertise) by clicking on the corresponding buttons (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 centres of expertise 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 centre varies from one country to another, depending on the health care system and on the size of the country.
Two types of centres of expertise are listed: the medical management and the genetic counselling centres of expertise, as many rare diseases are genetically determined. It is specified whether they are adapted for children only or for adults only.
When a centre of expertise has an official status in its country, it is indicated; however, official centres of expertise exist in very few European countries. Clinicians must apply to have their centre of expertise 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 in charge of the relevant medical specialty of the country concerned. The data are updated every year.
The French National Cancer Institute (INCa) networks correspond to the structuring of healthcare services for adult patients with rare cancers set up by the French National Cancer Institute.
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. If an centre of expertise is not listed in a region or a country, it may not have been identified or the centre of expertise may have refused to be listed. It is also possible that a centre of expertise has not yet been set up for some rare diseases.
By no means are these centres of expertise 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.