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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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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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Unique Rare Chromosome Disorder Support Group - http://www.rarechromo.org/
Support and information for families of children with rare disorders. |
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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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http://idic15.org/ - 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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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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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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Forum for Patients with Myotonic Dystrophy 2 - http://groups.yahoo.com/group/MyotonicDystrophy2
A forum for sharing information, increasing public awareness, and building advocacy for further research for patients diagnosed with Myotonic Dystrophy Type 2. |