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Conditions and Diseases
Health: Conditions and Diseases: Genetic Disorders
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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.
Chromosome Disorder Outreach, Inc.
- Non-profit patient advocacy organization. Support and information provided for those affected by rare chromosome disorder.
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 informed decisions throughout their lifetime.
Distal Trisomy 10q Families
- Support for families of children with Distal Trisomy 10q. Family stories, contacts, other information.
- Support and encouragement for people with congenital gender variations.
- A support group for families and professionals interested in the chromosomal condition known as isodicentric 15 (formerly inverted duplication 15).
Peter's Anomaly Support Group
- An online support group for people dealing with Peter's Anomaly.
- A United Kingdom support organisation for parents of infants with Trisomy 13 and 18 and other related disorders.
Support Organization for Trisomy 18, 13, and Related Disorders (SOFT)
- Provides literature, conferences, newsletter, chapter information, and international contacts.
Trisomy 18 Foundation
- 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.
Trisomy 18 Moms
- Lists Trisomy 18, Edwards syndrome memorial site, help making a website, and share a story.
Unique Rare Chromosome Disorder Support Group
- Support and information for families of children with rare disorders.
Yahoo Group - ATR-X
- Offers support for individuals caring for others affected by Alpha Thalassemia Mental Retardation Syndrome.
Yahoo Group - CMT Support
- Message board concerning Charcot-Marie-Tooth Disease.
Yahoo Group - Floating Harbor
- Forum for the parents and families of children with Floating Harbor Syndrome.
Yahoo Group - 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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