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Rare Disorders



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Agnosia
Aicardi Syndrome
Alström Syndrome
Barth Syndrome
Cerebrocostomandibular Syndrome
Cleidocranial Dysplasia
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Rubinstein-Taybi Syndrome
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VACTERL Association (1)
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Websites  
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Cherubs
www.cherubs-cdh.org
A non-profit support group for the families and medical care providers of children and adults born with Congenital Diaphragmatic Hernia. keywords: defect, birth, research, pregnancy, organization, north, marchdimes, defects, charity, cdh
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National Organization for Rare Disorders, Inc.
www.rarediseases.org/
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. keywords: syndrome, drugs
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Human Growth Foundation
www.hgfound.org/
Information about growth-related disorders through education, research, and advocacy. Member driven organization.
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Contact a Family
www.cafamily.org.uk
Information about this organization as well as the CaF directory of specific conditions and rare disorders. Also details about the Rare Disorders Alliance - UK.
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Fibrous Dysplasia Support Online
members.cox.net/fdsupport/index.html
For those seeking support and information concerning the rare bone diseases: fibrous dysplasia, McCune Albright Syndrome and Cherubism. keywords: surgery, rib, prayer, polyostotic, pamidronate, pain, monostotic, mandible, leg, hip
Rank: 0.0/5
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Kindler Syndrome
digilander.libero.it/camdic/KINDLER.html
An article and case study of this rare disease. Includes links.
Rank: 0.0/5
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Office of Rare Diseases
rarediseases.info.nih.gov/
Information on more than 6000 rare diseases, including current research, publications from scientific and medical journals, completed research, ongoing studies, and patient support groups. keywords: officerare, ordr, ord
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Information Centre for Rare Diseases and Orphan Drugs
www.raredis.org/modules/news/
Offers an Internet portal. Includes news, forums, rare disease and orphan drug information and registration forms keywords: trials, syndrome, science, research, promotion, projects, policy, patients, neur, medicine
Rank: 0.0/5
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European Organisation for Rare Diseases
www.eurordis.org
Alliance of patient associations dedicated to improving the quality of life of all people living with rare diseases in Europe. keywords: orphan, treatment, syndrome, sygdom, support, sjã¦lden, research, page, lã¦gemidler, home
Rank: 0.0/5
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