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| Web Pages |
| Online Genetic Syndrome Support Groups |
| Sites are listed alphabetically by disease/condition. |
| 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. |
| Peter's Anomaly Support Group |
| An online support group for people dealing with Peter's Anomaly. |
| Chromosome Deletion Outreach, Inc. (CDO) |
| Non-profit voluntary support group for families affected by rare chromosome disorders. |
| Blue Cone Monochromacy |
| A discussion board for those affected by BCM. Read the contents, search and post from this location. |
| 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. |
| S.O.F.T. |
| A United Kingdom support organisation for parents of infants with Trisomy 13 and 18 and other related disorders. |
| Unique Rare Chromosome Disorder Support Group |
| Support and information for families of children with rare disorders. |
| 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. |
| 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 informed decisions throughout their lifetime. |
| Chromosome 18 Issues |
| A support and awareness discussion board for people affected by this disorder. |
| Friedreichs's Ataxia Network |
| Support group providing some answers and up to date information on local support and worldwide research being conducted. Based in Brisbane. |
| Ideas |
| A support group for families and professionals interested in the chromosomal condition known as isodicentric 15 (formerly inverted duplication 15). |
| 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 |
| Yahoo Groups Floating Harbor |
| An active support site for the parents and families of children with Floating Harbor Syndrome. |
| The Rainbow |
| A forum for people who have chromosome abnormalites to show support, give advice and comfort. |
| Chromosome Help-Station |
| Information on rare chromosomal disorders. Support and advice for families. |
| 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. |
| Lafora body disease research talk |
| This is a discussion group about lafora body disease. |
| Distal Trisomy 10q Families |
| Support for families of children with Distal Trisomy 10q. Family stories, contacts, other information. |