Rare Disorders Websites

Alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.

A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.

Information about NORD, its programs, special events and the variety of services offered. Includes a rare disease, organization and orphan drug database. Diseases are listed alphabetically for easy searching.

Information about growth-related disorders through education, research, and advocacy. Member driven organization.

UK charity to support families of disabled children, whatever their condition or disability - from London.

An article and case study of this rare disease. Includes links.

Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.