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Health > Support Groups > Conditions and Diseases > Genetic Disorders

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Beckwith-Wiedemann Syndrome (2)
Down Syndrome (24)

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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.

Chromosome Deletion Outreach, Inc. (CDO) - http://www.chromodisorder.org/
Non-profit voluntary support group for families affected by rare chromosome disorders.

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.

Distal Trisomy 10q Families - http://trisomy10q.darylanderson.com
Support for families of children with Distal Trisomy 10q. Family stories, contacts, other information.

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.

GendersInX.org - http://GendersInX.org
Support and encouragement for people with congenital gender variations.

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).

Parents of Polydactyly and Webbed Children - http://p200.ezboard.com/bparentsofpolydactylychildren
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

Peter's Anomaly Support Group - http://www.petersanomaly.org/
An online support group for people dealing with Peter's Anomaly.

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.

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.

Trisomy 18 Angel - http://www.trisomy18angel.com
This site was made in memory of our daughter Abigail Renee, to help other families who have been given a diagnosis of Trisomy 18.

Trisomy 18 Moms - http://www.t18moms.com/
Lists Trisomy 18, Edwards syndrome memorial site, help making a website, and share a story.

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.

Unique Rare Chromosome Disorder Support Group - http://www.rarechromo.org/
Support and information for families of children with rare disorders.

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.

X-Linked Alpha Thalassemia M/R Syndrome - http://health.groups.yahoo.com/group/atr-x/
Features a Yahoo! group for family support for individuals caring for others affected by "Alpha Thalassemia Mental Retardation Syndrome (ATR-X).

Yahoo Groups Floating Harbor - http://groups.yahoo.com/group/floating_harbor/
An active support site for the parents and families of children with Floating Harbor Syndrome.

Yahoo Support Group for CMT-HMSN-HNPP - http://health.groups.yahoo.com/group/CMT-Support/
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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