- 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.
http://www.geneticalliance.org/
- Chromosome 18 Issues
A support and awareness discussion board for people affected by this disorder.
http://pub6.ezboard.com/bchromosome18issues
- Chromosome Help-Station
Information on rare chromosomal disorders. Support and advice for families.
http://www.chromosomehelpstation.com/
- 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.
http://www.cdlsusa.org
- Distal Trisomy 10q Families
Support for families of children with Distal Trisomy 10q. Family stories, contacts, other information.
http://trisomy10q.darylanderson.com
- Friedreichs's Ataxia Network
Support group providing some answers and up to date information on local support and worldwide research being conducted. Based in Brisbane.
http://www.fan.asn.au
- Ideas
A support group for families and professionals interested in the chromosomal condition known as isodicentric 15 (formerly inverted duplication 15).
http://IDIC15.ORG
- Parents of Polydactyly and Webbed Children
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
http://pub55.ezboard.com/bparentsofpolydactylychildren
- S.O.F.T.
A United Kingdom support organisation for parents of infants with Trisomy 13 and 18 and other related disorders.
http://www.soft.org.uk
- S.O.F.T.
Support Organization in the United States for Trisomy 18, 13, and other related disorders. Provides literature, conferences, newsletter, chapter information, and international contacts.
http://www.trisomy.org/
- The Rainbow
A forum for people who have chromosome abnormalites to show support, give advice and comfort.
http://pub10.ezboard.com/btherainbow
- Yahoo Groups Floating Harbor
An active support site for the parents and families of children with Floating Harbor Syndrome.
http://groups.yahoo.com/group/floating_harbor/
|
