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Home » Rare Disorders (10) - order by Newest

Agnosia
Aicardi Syndrome
Alstr%c3%b6m Syndrome
Barth Syndrome
Cerebrocostomandibular Syndrome
Cleidocranial Dysplasia
Cystinosis
Degos
Erythromelalgia
Jacobsen Syndrome
Melorheostosis
Moyamoya
Ollier Disease
Pemphigoid
Pemphigus
Phenylketonuria
Pierre Robin Syndrome
Progeria
Rubinstein-Taybi Syndrome
Tyrosinemia
VATER Syndrome
Wegener's Granulomatosis
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� Cherubs
Description: A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia.
Hits: 73 | Rating: ( 5.0 ) by 1 users
Added: 9/13/2004
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� Contact a Family
Description: Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.
Hits: 70 | Rating: ( 5.0 ) by 1 users
Added: 8/29/2004
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� Fibrous Dysplasia Support Online
Description: For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism.
Hits: 78 | Rating: ( 5.0 ) by 1 users
Added: 8/15/2004
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� Human Growth Foundation
Description: Information about growth-related disorders through education, research, and advocacy. Member driven organization.
Hits: 82 | Rating: ( 5.0 ) by 1 users
Added: 8/5/2004
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� Information Centre for Rare Diseases and Orphan Drugs
Description: Offers an Internet portal. Includes news, forums, rare disease and orphan drug info and registration forms
Hits: 247 | Rating: ( 5.0 ) by 1 users
Added: 12/29/2003
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� Kindler Syndrome
Description: An article and case study of this rare disease. Includes links.
Hits: 97 | Rating: ( 5.0 ) by 1 users
Added: 12/16/2003
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� Lymphangiomatosis and Gorham's Vanishing Bone Disease
Description: Provides general information and a personal account, including pictures and X-rays. Also offers patient contact and an email discussion group.
Hits: 90 | Rating: ( 5.0 ) by 1 users
Added: 12/3/2003
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� Nomid /Cinca
Description: 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 suppo
Hits: 72 | Rating: ( 5.0 ) by 1 users
Added: 11/20/2003
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� Office of Rare Diseases
Description: Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups.
Hits: 76 | Rating: ( 5.0 ) by 1 users
Added: 11/7/2003
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� Tetrahydrobiopterin
Description: Information on structure, biosynthesis and pathophysiology of BH4 and tetrahydrobiopterin deficiency.
Hits: 112 | Rating: ( 5.0 ) by 1 users
Added: 10/25/2003
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  Total Links: 10 - Showing Page: 1 of 1
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