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Web Pages |
Cherubs |
A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia. |
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. |
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. |
International Rare Disease Support Network |
A community providing more than a 1000 different links to support groups for the people of all nations. |
Human Growth Foundation |
Information about growth-related disorders through education, research, and advocacy. Member driven organization. |
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. |
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. |
Tetrahydrobiopterin |
Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency. |
Fibrous Dysplasia Support Online |
For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism. |
Kindler Syndrome |
An article and case study of this rare disease. Includes links. |
Lymphangiomatosis and Gorham's Vanishing Bone Disease |
Provides general information and a personal account, including pictures and X-rays. Also offers patient contact and an email discussion group. |
Fibrosing Mediastinitis |
The least common, but most severe, late complication of histoplasmosis. Educational and research information. Includes interviews, patient stories, and a community forum. |