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This page was last updated on October 10th, 2008
This page was last updated on October 10th, 2008
Genetic Disorders (from Conditions and Diseases)
Canadian Content » Health » Support_Groups » Conditions_and_Diseases » Genetic_Disorders »
Chromosome Help-Station
Information on rare chromosomal disorders. Support and advice for families.
Oto-Palatal-Digital Syndrome Family Resource Network
Resources, articles, support and general information on the rare disorder, Oto-Palatal-Digital Syndrome.
Lafora body disease research talk
This is a discussion group about lafora body disease.
Who is EPI ?
The mission of the European Porphyria Initiative (EPI) is to present an up to date approach to the understanding of porphyria.
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.
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.
Trisomy 18 Moms
A place to list your Trisomy 18, Edwards syndrome memorial site , get help making a website, to share your unique story via the web.
Unique Rare Chromosome Disorder Support Group
Support and information for families of children with rare disorders.
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.
Blue Cone Monochromacy
A discussion board for those affected by BCM. Read the contents, search and post from this location.
Chromosome 18 Issues
A support and awareness discussion board for people affected by this disorder.
Forum for Patients with 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.
S.O.F.T.
A United Kingdom support organisation for parents of infants with Trisomy 13 and 18 and other related disorders.
Trisomy 18 Support Online Community
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.
Ideas
A support group for families and professionals interested in the chromosomal condition known as isodicentric 15 (formerly inverted duplication 15).
Yahoo Support Group for CMT-HMSN-HNPP
A very active support group that prides itself on helping it's members through the good - bad days and posting the latest CMT/HMSN/HNPP research information available on the web.
Chromosome Deletion Outreach, Inc. (CDO)
Non-profit voluntary support group for families affected by rare chromosome disorders.
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 infor
Yahoo Groups Floating Harbor
An active support site for the parents and families of children with Floating Harbor Syndrome.
Peter's Anomaly Support Group
An online support group for people dealing with Peter's Anomaly.
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
Philadelphia, PA., Internet Support For Invisible/Hidden Disabilities
The Philadelphia, PA., Internetsupport For invisible/hidden disabilities.
Thomas Scott Davidson
This is a memorial website for Thomas Scott Davidson who died from Anencephaly.
Online Genetic Syndrome Support Groups
Sites are listed alphabetically by disease/condition.
The Rainbow
A forum for people who have chromosome abnormalites to show support, give advice and comfort.
Distal Trisomy 10q Families
Support for families of children with Distal Trisomy 10q. Family stories, contacts, other information.
Trisomy 18 Angel
This site was made in memory of our daughter Abigail Renee, to help other families who have been given a diagnosis of Trisomy 18.
Information on rare chromosomal disorders. Support and advice for families.
Resources, articles, support and general information on the rare disorder, Oto-Palatal-Digital Syndrome.
This is a discussion group about lafora body disease.
The mission of the European Porphyria Initiative (EPI) is to present an up to date approach to the understanding of porphyria.
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.
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.
A place to list your Trisomy 18, Edwards syndrome memorial site , get help making a website, to share your unique story via the web.
Support and information for families of children with rare disorders.
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.
A discussion board for those affected by BCM. Read the contents, search and post from this location.
A support and awareness discussion board for people affected by this disorder.
A forum for sharing information, increasing public awareness, and building advocacy for further research for patients diagnosed with Myotonic Dystrophy Type 2.
A United Kingdom support organisation for parents of infants with Trisomy 13 and 18 and other related disorders.
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.
A support group for families and professionals interested in the chromosomal condition known as isodicentric 15 (formerly inverted duplication 15).
A very active support group that prides itself on helping it's members through the good - bad days and posting the latest CMT/HMSN/HNPP research information available on the web.
Non-profit voluntary support group for families affected by rare chromosome disorders.
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 infor
An active support site for the parents and families of children with Floating Harbor Syndrome.
An online support group for people dealing with Peter's Anomaly.
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
The Philadelphia, PA., Internetsupport For invisible/hidden disabilities.
This is a memorial website for Thomas Scott Davidson who died from Anencephaly.
Sites are listed alphabetically by disease/condition.
A forum for people who have chromosome abnormalites to show support, give advice and comfort.
Support for families of children with Distal Trisomy 10q. Family stories, contacts, other information.
This site was made in memory of our daughter Abigail Renee, to help other families who have been given a diagnosis of Trisomy 18.
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