Inserm US 14



The ORPHANET is a database dedicated to providing information on rare diseases and orphan drugs. Its access is free of charge. It includes an encyclopedia of rare diseases covering more than 1,300 diseases which is expert-authored and peer-reviewed, and a directory of services in Europe, including information on specialized clinics, clinical laboratories, ongoing research projects, clinical trials, registries, and support groups. ORPHANET also offers to patients the possibility to register to be informed about new clinical research projects or to be put in contact with another patient or family experiencing the same disease. ORPHANET has established a sister web site at www.orphanxchange.org to allow researchers to post their projects that may be of interest to industry. This is a tool to facilitate partnerships in the area of device and drug development.