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Alliance of Genetic Support Groups - http://www.geneticalliance.org/
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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Online Genetic Syndrome Support Groups - http://members.aol.com/dnacutter/sgroup.htm
Sites are listed alphabetically by disease/condition. |
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Unique Rare Chromosome Disorder Support Group - http://www.rarechromo.org/
Support and information for families of children with rare disorders. |
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Ideas - http://idic15.org/
A support group for families and professionals interested in the chromosomal condition known as isodicentric 15 (formerly inverted duplication 15). |
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Chromosome Deletion Outreach, Inc. (CDO) - http://www.chromodisorder.org/
Non-profit voluntary support group for families affected by rare chromosome disorders. |
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Cornelia de Lange Syndrome (CdLS) Foundation Outreach - http://www.cdlsusa.org
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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Chromosome Help-Station - http://www.chromosomehelpstation.com/
Information on rare chromosomal disorders. Support and advice for families. |
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S.O.F.T. - http://www.trisomy.org/
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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Who is EPI ? - http://www.porphyria-europe.com
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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Trisomy 18 Support Online Community - http://www.trisomy18support.org
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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Chromosome 22 Central - http://www.nt.net/~a815/chr22.htm
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 malformations. |
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S.O.F.T. - http://www.soft.org.uk
A United Kingdom support organisation for parents of infants with Trisomy 13 and 18 and other related disorders. |
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Distal Trisomy 10q Families - http://trisomy10q.darylanderson.com
Support for families of children with Distal Trisomy 10q. Family stories, contacts, other information. |
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GendersInX.org - http://GendersInX.org
Support and encouragement for people with congenital gender variations. |
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Trisomy 18 Moms - http://www.t18moms.com/
Lists Trisomy 18, Edwards syndrome memorial site, help making a website, and share a story. |