http://rarediseases.info.nih.gov

The Office of Rare Diseases Research web site aims to answer questions about rare diseases and the activities of the Office of Rare Diseases Research  for patients, their families, healthcare providers, researchers, educators, students, and anyone with concern for and interest in rare diseases. The site provides information about Office of Rare Diseases Research -sponsored biomedical research, scientific conferences, and rare and genetic diseases. It also serves as a portal to information on major topics of interest to the rare diseases community.