Rare diseases (prevalence < 5:10,000) are relatively uncommon, but to day about 6000 of these diseases are known so patients suffering from such a disease are forming a large group. Relevant information diagnoses and adequate therapy are difficult to obtain for these vulnerable patients. Physicians and researchers are working in networks more and more to record the outcome of research and to dispose it by databases. Patient organizations are given information and directives and their websites are accessible for the public. In this issue an overview will be given of the website of Orphanet, a database dedicated to information on rare diseases and orphan drugs, and of the website of the Dutch Steering Committee Orphan Drugs, a portal site with information to patients with a rare disease.