Genetic Disorders Conditions and Diseases Support Groups
Genetic Disorders Conditions and Diseases Support Groups
Top: Health: Support Groups: Conditions and Diseases: Genetic Disorders
See Also:
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S.O.F.T. - Support Organization in the United States for Trisomy 18, 13, and other related disorders. Provides literature, conferences, newsletter, chapter information, and international contacts.
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Trisomy 18 Angel - This site was made in memory of our daughter Abigail Renee, to help other families who have been given a diagnosis of Trisomy 18.
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Trisomy 18 Support Online Community - Participate in this support group for those pregnant with, parenting, or grieving the loss of child with Trisomy 18. Includes resources for all stages of the journey.
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Parents of Polydactyly and Webbed Children - A support board for those parents of children born with extra toes/fingers as well as webbing. A place to learn new information and make friends with others
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Trisomy 18 Moms - Lists Trisomy 18, Edwards syndrome memorial site, help making a website, and share a story.
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Unique Rare Chromosome Disorder Support Group - Support and information for families of children with rare disorders.
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Cornelia de Lange Syndrome (CdLS) Foundation Outreach - Family support organization which exists to ensure the early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make infor
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X-Linked Alpha Thalassemia M/R Syndrome - Features a Yahoo! group for family support for individuals caring for others affected by "Alpha Thalassemia Mental Retardation Syndrome (ATR-X).
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Alliance of Genetic Support Groups - National coalition of consumers, professionals, and genetic support groups to voice the common concerns of children, adults, and families living with, and at risk for, genetic conditions.
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Distal Trisomy 10q Families - Support for families of children with Distal Trisomy 10q. Family stories, contacts, other information.
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Chromosome Help-Station - Information on rare chromosomal disorders. Support and advice for families.
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Yahoo Support Group for CMT-HMSN-HNPP - A very active support group that prides itself on helping its members through the good - bad days and posting the latest CMT/HMSN/HNPP research information available on the web.
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Yahoo Groups Floating Harbor - An active support site for the parents and families of children with Floating Harbor Syndrome.
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Peter's Anomaly Support Group - An online support group for people dealing with Peter's Anomaly.
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Who is EPI ? - The mission of the European Porphyria Initiative (EPI) is to present an up to date approach to the understanding of porphyria.
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GendersInX.org - Support and encouragement for people with congenital gender variations.
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Oto-Palatal-Digital Syndrome Family Resource Network - Resources, articles, support and general information on the rare disorder, Oto-Palatal-Digital Syndrome.
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Forum for Patients with Myotonic Dystrophy 2 - A forum for sharing information, increasing public awareness, and building advocacy for further research for patients diagnosed with Myotonic Dystrophy Type 2.
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Chromosome Deletion Outreach, Inc. (CDO) - Non-profit voluntary support group for families affected by rare chromosome disorders.
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Thomas Scott Davidson - This is a memorial website for Thomas Scott Davidson who died from Anencephaly.
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Ideas - A support group for families and professionals interested in the chromosomal condition known as isodicentric 15 (formerly inverted duplication 15).
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