[Orphanet and the Dutch Steering Committee Orphan Drugs. A European and Dutch databank of information on rare...

Patients with one of the 6,000 rare diseases that are at the present time known to exist, together form a large group. Relevant information, a correct diagnosis and appropriate and adequate therapy are sometimes difficult to obtain for these vulnerable patients. Physicians and researchers are increasingly working in networks to record the findings of research and to make it available by means of databases. Patient organizations provide information and guidelines and are easily accessible for the public via their websites. In this contribution, the websites of, first, Orphanet, a database devoted to information on rare diseases,and, second, the Dutch Steering Committee Orphan Drugs, a portal site with information for patients with a rare disease, will be discussed.