Rare Disorders
Rare Disorders
Rare Disorders 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.
- Human Growth Foundation Information about growth-related disorders through education, research, and advocacy. Member driven organization.
- 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.
- 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.
- 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.
- Spinal AVM Support Group Information for those whom have been touched by this disease. Includes message board, membership and contact details.
- Proximal Femaral Focal Deficiency This website about Michael was done so that other PFFD families can see his photos and doctors can view his xrays.
- International Rare Disease Support Network A community providing more than a 1000 different links to support groups for the people of all nations.
- Tetrahydrobiopterin Home Page Information on structure, biosynthesis and pathophysiology of BH4 - database of BH4 deficiencies - database of mutations - screening for BH4 deficiency. These are just a few of the topics discussed.
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