Genetic Disorders Conditions and Diseases Support Groups

Genetic Disorders

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• - Support Organization in the United States for Trisomy 18, 13, and other related disorders. Provides literature, conferences, newsletter, chapter information, and international contacts.
  
• - A discussion board for those affected by BCM. Read the contents, search and post from this location.
  
• - 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.
  
• - 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.
  
• - 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
  
• - This site was made in memory of our daughter Abigail Renee, to help other families who have been given a diagnosis of Trisomy 18.
  
• - 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.
  
• - A support and awareness discussion board for people affected by this disorder.
  
• - 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.
  
• - The Philadelphia, PA., Internetsupport For invisible/hidden disabilities.
  
• - The mission of the European Porphyria Initiative (EPI) is to present an up to date approach to the understanding of porphyria.
  
• - Support and information for families of children with rare disorders.
  
• - A support group for families and professionals interested in the chromosomal condition known as isodicentric 15 (formerly inverted duplication 15).
  
• - A forum for people who have chromosome abnormalites to show support, give advice and comfort.
  
• - Features a Yahoo! group for family support for individuals caring for others affected by "Alpha Thalassemia Mental Retardation Syndrome (ATR-X).
  
• - A forum for sharing information, increasing public awareness, and building advocacy for further research for patients diagnosed with Myotonic Dystrophy Type 2.
  
• - 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.
  
• - An active support site for the parents and families of children with Floating Harbor Syndrome.
  
• - Support for families of children with Distal Trisomy 10q. Family stories, contacts, other information.
  
• - This is a memorial website for Thomas Scott Davidson who died from Anencephaly.
  
• - Non-profit voluntary support group for families affected by rare chromosome disorders.
  
• - This is a discussion group about lafora body disease.
  
• - 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
  
• - Resources, articles, support and general information on the rare disorder, Oto-Palatal-Digital Syndrome.
  
• - Sites are listed alphabetically by disease/condition.
  
• - An online support group for people dealing with Peter's Anomaly.
  
• - Information on rare chromosomal disorders. Support and advice for families.
  
• - A place to list your Trisomy 18, Edwards syndrome memorial site , get help making a website, to share your unique story via the web.
  
  

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