Genetic Disorders Conditions and Diseases Support Groups

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Top: Health: Support_Groups: Conditions_and_Diseases: Genetic_Disorders:

• Top/Health/Conditions and Diseases/Genetic Disorders

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