Self-help Directory

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

Contact a Family
Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.

Fibrous Dysplasia Support Online
For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.

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

Information Centre for Rare Diseases and Orphan Drugs
Offers an Internet portal. Includes news, forums, rare disease and orphan drug info and registration forms

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

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.

Nomid /Cinca
Resource for parents and patients suffering from Neonatal Onset Multi-inflammatory Disease Chronic, or Infantile, Neurologic, Cutaneous and Articular syndrome. Site maintained by patients, parents and friends for their counterparts worldwide. Email support group at eGroups.

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.

Tetrahydrobiopterin
Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.