Consumer Support Groups
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whatUseek Directory Site Listings:
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.
Blue Cone Monochromacy
- A discussion board for those affected by BCM. Read the contents, search and post from this location.
Chromosome 18 Issues
- A support and awareness discussion board for people affected by this disorder.
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.
Chromosome Deletion Outreach, Inc. (CDO)
- Non-profit voluntary support group for families affected by rare chromosome disorders.
Chromosome Deletion Outreach.
- Provides support and information to families. Includes family stories, a library, FAQs and resources.
Online Genetic Syndrome Support Groups
- Sites are listed alphabetically by disease/condition.
Peter's Anomaly Support Group
- An online support group for people dealing with Peter's Anomaly.
- A support organisation for parents of infants with Trisomy 13 and 18 and other related disorders.
Spinal Muscular Atrophy E-mail Group
- For people with or people who care for people with SMA.
The Gateway Kiosk: Open Topic Forum
- A Message Board for communicating questions, concerns and dialogue on children's genetic diseases. Includes a parent-match topic.
Unique Rare Chromosome Disorder Support Group
- Support and information for families of children with rare disorders.
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