Genetic Disorders (Conditions and Diseases)

Genetic Disorders Sites:

Chromosome Deletion Outreach, Inc. (CDO) Non-profit voluntary support group for families affected by rare chromosome disorders. http://www.chromodisorder.org/ Who is EPI ? The mission of the European Porphyria Initiative (EPI) is to present an up to date approach to the understanding of porphyria. http://www.porphyria-europe.com 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. http://www.trisomy18support.org Chromosome Help-Station Information on rare chromosomal disorders. Support and advice for families. http://www.chromosomehelpstation.com/ 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/ 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. http://www.trisomy18angel.com 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 http://www.cdlsusa.org Lafora body disease research talk This is a discussion group about lafora body disease. http://groups.msn.com/laforabodydiseaseresearchtalk 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 Ideas A support group for families and professionals interested in the chromosomal condition known as isodicentric 15 (formerly inverted duplication 15). http://IDIC15.ORG 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 Chromosome 18 Issues A support and awareness discussion board for people affected by this disorder. http://pub6.ezboard.com/bchromosome18issues Distal Trisomy 10q Families Support for families of children with Distal Trisomy 10q. Family stories, contacts, other information. http://trisomy10q.darylanderson.com Online Genetic Syndrome Support Groups Sites are listed alphabetically by disease/condition. http://members.aol.com/dnacutter/sgroup.htm 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. http://health.groups.yahoo.com/group/CMT-Support/ 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/ 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. http://groups.yahoo.com/group/MyotonicDystrophy2 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 Peter's Anomaly Support Group An online support group for people dealing with Peter's Anomaly. http://www.freeyellow.com/members8/rob66/index.html Thomas Scott Davidson This is a memorial website for Thomas Scott Davidson who died from Anencephaly. http://www.geocities.com/thomasscottdavidson/index.html 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/ Oto-Palatal-Digital Syndrome Family Resource Network Resources, articles, support and general information on the rare disorder, Oto-Palatal-Digital Syndrome. http://www.geocities.com/opdsyndrome Unique Rare Chromosome Disorder Support Group Support and information for families of children with rare disorders. http://www.rarechromo.org/ The Rainbow A forum for people who have chromosome abnormalites to show support, give advice and comfort. http://pub10.ezboard.com/btherainbow 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. http://www.T18moms.com Philadelphia, PA., Internet Support For Invisible/Hidden Disabilities The Philadelphia, PA., Internetsupport For invisible/hidden disabilities. http://groups.aol.com/_cqr/edsphilly3?mmch_=0 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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