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Home / Health / Support Groups / Conditions and Diseases / Genetic
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Web Sites
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- Alliance of Genetic Support Groups - Nnational 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.
www.geneticalliance.org
- Blue Cone Monochromacy - A discussion board for those affected by BCM. Read the contents, search and post from this location.
www.yandle.com/bcm
- Chromosome 18 Issues - A support and awareness discussion board for people affected by this disorder.
pub6.ezboard.com/bchromosome18issues
- Chromosome 22 Central - Support group for families who have children with any chromosome 22 disorder, including trisomies, cat eye syndrome, translocations, deletions 22q11, 22q13, VCFS, Digeorge syndrome, rings and unique malformations.
www.nt.net/~a815/chr22.htm
- Chromosome Deletion Outreach, Inc. (CDO) - Non-profit voluntary support group for families affected by rare chromosome disorders.
www.chromodisorder.org/index.html
- 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.
www.cdlsusa.org
- 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.
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).
IDIC15.ORG
- Nobellybutton - For adult survivors of gastroschisis, omphaloceles, or other abdominal wall defects.
www.nobellybutton.org
- Online Genetic Syndrome Support Groups - Sites are listed alphabetically by disease/condition.
members.aol.com/dnacutter/sgroup.htm
- Peter's Anomaly Support Group - An online support group for people dealing with Peter's Anomaly.
www.freeyellow.com/members8/rob66/index.html
- S.O.F.T. - A United Kingdom support organisation for parents of infants with Trisomy 13 and 18 and other related disorders.
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.
www.trisomy.org
- Trisomy 13 Support Board - A message board for people who have children or who have lost children to a trisomy disorder.
aimoo.com/trisomysupport
- Unique Rare Chromosome Disorder Support Group - Support and information for families of children with rare disorders.
www.rarechromo.org
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