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Orphanet provides information on centres of expertise or networks of centres of expertise dedicated to the medical management and/or genetic counselling for one particular rare disease or a group of rare diseases. Medical management centres should deliver a service of indisputably higher quality than a standard hospital service in the relevant speciality. It comprises centres that are officially designated by the health authorities in the country and centres that are not officially designated but which fulfil the Orphanet eligibility criteria, adapted from the recommendations of the European Union Committee of Experts on Rare Diseases. Genetic counselling centres are those organising genetic counselling consultations for all genetic diseases or for a particular genetic disease/group of 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).
Data collection takes place in the Orphanet consortium countries and is currently ongoing. Thus the database cannot be regarded as comprehensive. If a centre of expertise is not listed in a region or a country, it may not have been identified or may have refused to be listed. It is also possible that centres of expertise have 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.
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.