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 8th International Symposium on Mucopolysaccharide and Related Diseases Description: 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. (mps-kongress2004.de) |
| Alliance of Genetic Support Groups Description: 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. (geneticalliance.org) |
| Blue Cone Monochromacy Description: A discussion board for those affected by BCM. Read the contents, search and post from this location. (yandle.com) |
| Chromosome 18 Issues Description: A support and awareness discussion board for people affected by this disorder. (pub6.ezboard.com) |
| Chromosome 22 Central Description: 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. (nt.net) |
| Chromosome Deletion Outreach, Inc. (CDO) Description: Non-profit voluntary support group for families affected by rare chromosome disorders. (chromodisorder.org) |
| Chromosome Help-Station Description: Information on rare chromosomal disorders. Support and advice for families. (chromosomehelpstation.com) |
| Cornelia de Lange Syndrome (CdLS) Foundation Outreach Description: 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. (cdlsusa.org) |
| Distal Trisomy 10q Families Description: Support for families of children with Distal Trisomy 10q. Family stories, contacts, other information. (trisomy10q.darylanderson.com) |
| Forum for Patients with Myotonic Dystrophy 2 Description: A forum for sharing information, increasing public awareness, and building advocacy for further research for patients diagnosed with Myotonic Dystrophy Type 2. (groups.yahoo.com) |
| Ideas Description: A support group for families and professionals interested in the chromosomal condition known as isodicentric 15 (formerly inverted duplication 15). (IDIC15.ORG) |
| Lafora body disease research talk Description: This is a discussion group about lafora body disease. (groups.msn.com) |
| Online Genetic Syndrome Support Groups Description: Sites are listed alphabetically by disease/condition. (members.aol.com) |
| Oto-Palatal-Digital Syndrome Family Resource Network Description: Resources, articles, support and general information on the rare disorder, Oto-Palatal-Digital Syndrome. (geocities.com) |
| Parents of Polydactyly and Webbed Children Description: 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 (pub55.ezboard.com) |
| Peter's Anomaly Support Group Description: An online support group for people dealing with Peter's Anomaly. (freeyellow.com) |
| Philadelphia, PA., Internet Support For Invisible/Hidden Disabilities Description: The Philadelphia, PA., Internetsupport For invisible/hidden disabilities. (groups.aol.com) |
| S.O.F.T. Description: A United Kingdom support organisation for parents of infants with Trisomy 13 and 18 and other related disorders. (soft.org.uk) |
| S.O.F.T. Description: Support Organization in the United States for Trisomy 18, 13, and other related disorders. Provides literature, conferences, newsletter, chapter information, and international contacts. (trisomy.org) |
| The Rainbow Description: A forum for people who have chromosome abnormalites to show support, give advice and comfort. (pub10.ezboard.com) |
| Thomas Scott Davidson Description: This is a memorial website for Thomas Scott Davidson who died from Anencephaly. (geocities.com) |
| Trisomy 18 Angel Description: This site was made in memory of our daughter Abigail Renee, to help other families who have been given a diagnosis of Trisomy 18. (trisomy18angel.com) |
| Trisomy 18 Moms Description: A place to list your Trisomy 18, Edwards syndrome memorial site , get help making a website, to share your unique story via the web. (T18moms.com) |
| Trisomy 18 Support Online Community Description: 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. (trisomy18support.org) |
| Unique Rare Chromosome Disorder Support Group Description: Support and information for families of children with rare disorders. (rarechromo.org) |
| Who is EPI ? Description: The mission of the European Porphyria Initiative (EPI) is to present an up to date approach to the understanding of porphyria. (porphyria-europe.com) |
| X-Linked Alpha Thalassemia M/R Syndrome Description: Features a Yahoo! group for family support for individuals caring for others affected by "Alpha Thalassemia Mental Retardation Syndrome (ATR-X). (health.groups.yahoo.com) |
| Yahoo Groups Floating Harbor Description: An active support site for the parents and families of children with Floating Harbor Syndrome. (groups.yahoo.com) |
| Yahoo Support Group for CMT-HMSN-HNPP Description: 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. (health.groups.yahoo.com) |
