National Organization for Rare Disorders, Inc.
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.
UK charity to support families of disabled children, whatever their condition or disability - from London.
European Organisation for Rare Diseases
Alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.
Human Growth Foundation
Information about growth-related disorders through education, research, and advocacy. Member driven organization.
An article and case study of this rare disease. Includes links.
Office of Rare Diseases
Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.