| Directory > Health > Support Groups > Conditions and Diseases > Genetic Disorders Distal Trisomy 10q Families
Support for families of children with Distal Trisomy 10q. Family stories, contacts, other
information.
http://trisomy10q.darylanderson.com
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Lafora body disease research talk
This is a discussion group about lafora body disease.
http://groups.msn.com/laforabodydiseaseresearchtalk
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8th International Symposium on Mucopolysaccharide and Related Diseases
The 8th International Symposium on MPS and Related Diseases will be held in Mainz, Germany.
Traditionally, this symposium unites scientists, patients and their parents to share and discuss
recent scientific results.
http://www.mps-kongress2004.de
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Chromosome Help-Station
Information on rare chromosomal disorders. Support and advice for families.
http://www.chromosomehelpstation.com/
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The Rainbow
A forum for people who have chromosome abnormalites to show support, give advice and comfort.
http://pub10.ezboard.com/btherainbow
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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/
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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
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Ideas
A support group for families and professionals interested in the chromosomal condition known as
isodicentric 15 (formerly inverted duplication 15).
http://IDIC15.ORG
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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
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Chromosome 18 Issues
A support and awareness discussion board for people affected by this disorder.
http://pub6.ezboard.com/bchromosome18issues
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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
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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/
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Unique Rare Chromosome Disorder Support Group
Support and information for families of children with rare disorders.
http://www.rarechromo.org/
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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
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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.
http://www.nt.net/~a815/chr22.htm
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Blue Cone Monochromacy
A discussion board for those affected by BCM. Read the contents, search and post from this
location.
http://www.yandle.com/bcm
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Chromosome Deletion Outreach, Inc. (CDO)
Non-profit voluntary support group for families affected by rare chromosome disorders.
http://www.chromodisorder.org/
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Peter's Anomaly Support Group
An online support group for people dealing with Peter's Anomaly.
http://www.freeyellow.com/members8/rob66/index.html
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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.
http://www.geneticalliance.org/
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Online Genetic Syndrome Support Groups
Sites are listed alphabetically by disease/condition.
http://members.aol.com/dnacutter/sgroup.htm
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