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Orphanet provides information on networks of experts, or networks of expertise, focused on a rare disease or on a group of rare diseases. These networks have either a clinical or research focus. They include, for example, learned societies, research networks, study groups, or task forces.


Data collection takes place in Orphanet consortium countries and is currently ongoing. Thus the database cannot be regarded as comprehensive. If a network of experts 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.