Rare Disorders
- Kindler Syndrome (Site) - An article and case study of this rare disease. Includes links.
- National Organization for Rare Disorders, Inc. (Site) - 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.
- Cherubs (Site) - A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.
- Human Growth Foundation (Site) - Information about growth-related disorders through education, research, and advocacy. Member driven organization.
- Information Centre for Rare Diseases and Orphan Drugs (Site) - Offers an Internet portal. Includes news, forums, rare disease and orphan drug information and registration forms
- Contact a Family (Site) - 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 (Site) - For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.
- Nomid /Cinca (Site) - 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 (Site) - 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 (Site) - Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.
- European Organisation for Rare Diseases (Site) - Alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe.
Last update: 2008-05-06 13:32:15 Rare Disorders | Copyright 2008 HubHip.com