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1. |
Alliance of Genetic Support Groups
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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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Chromosome 22 Central
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Support group for families who have children with any chromosome 22 disorder, including trisomies, cat eye syndrome, translocations, deletions 22q11, 22q13, VCFS, Digeorge syndrome, rings and unique malformations.
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Chromosome Deletion Outreach, Inc. (CDO)
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Non-profit voluntary support group for families affected by rare chromosome disorders.
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Chromosome Help-Station
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Information on rare chromosomal disorders. Support and advice for families.
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Cornelia de Lange Syndrome (CdLS) Foundation Outreach
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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 informed decisions throughout their lifetime.
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Distal Trisomy 10q Families
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Support for families of children with Distal Trisomy 10q. Family stories, contacts, other information.
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7. |
Ideas
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A support group for families and professionals interested in the chromosomal condition known as isodicentric 15 (formerly inverted duplication 15).
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Lafora body disease research talk
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This is a discussion group about lafora body disease.
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9. |
Online Genetic Syndrome Support Groups
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Sites are listed alphabetically by disease/condition.
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S.O.F.T.
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A United Kingdom support organisation for parents of infants with Trisomy 13 and 18 and other related disorders.
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S.O.F.T.
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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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12. |
The Rainbow
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A forum for people who have chromosome abnormalites to show support, give advice and comfort.
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13. |
Unique Rare Chromosome Disorder Support Group
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Support and information for families of children with rare disorders.
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Yahoo Groups Floating Harbor
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An active support site for the parents and families of children with Floating Harbor Syndrome.
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Yahoo Support Group for CMT-HMSN-HNPP
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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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Forum for Patients with Myotonic Dystrophy 2
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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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Oto-Palatal-Digital Syndrome Family Resource Network
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Resources, articles, support and general information on the rare disorder, Oto-Palatal-Digital Syndrome.
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Parents of Polydactyly and Webbed Children
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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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19. |
Peter's Anomaly Support Group
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An online support group for people dealing with Peter's Anomaly.
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Philadelphia, PA., Internet Support For Invisible/Hidden Disabilities
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The Philadelphia, PA., Internetsupport For invisible/hidden disabilities.
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21. |
Thomas Scott Davidson
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This is a memorial website for Thomas Scott Davidson who died from Anencephaly.
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22. |
Trisomy 18 Angel
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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 Moms
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A place to list your Trisomy 18, Edwards syndrome memorial site , get help making a website, to share your unique story via the web.
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Trisomy 18 Support Online Community
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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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25. |
Who is EPI ?
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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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26. |
X-Linked Alpha Thalassemia M/R Syndrome
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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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