Genetic Disorders Websites

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.

Non-profit patient advocacy organization. Support and information provided for those affected by rare chromosome disorder.

A United Kingdom support organisation for parents of infants with Trisomy 13 and 18 and other related disorders.

Support and information for families of children with rare disorders.

Provides literature, conferences, newsletter, chapter information, and international contacts.

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.

Forum for the parents and families of children with Floating Harbor Syndrome.

A forum for sharing information, increasing public awareness, and building advocacy for further research for patients diagnosed with Myotonic Dystrophy Type 2.

Message board concerning Charcot-Marie-Tooth Disease.

Offers support for individuals caring for others affected by Alpha Thalassemia Mental Retardation Syndrome.

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.