| 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. |
| 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. |
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