22q11.2 deletion syndrome
Are there good support groups for 22q11.2 deletion syndrome?
There are many support groups available for people with 22q11 deletion syndrome as well as their loved ones. Each support group is different and vary in how active they are and the aspects of 22q11.2 deletion syndrome they focus on. A few online support groups are listed below and you can also ask your genetic counselor or doctor if there are any in-person support groups in your area.
- Chromosome 22 Central Inc. http://www.c22c.org
- The International 22q11.2 Foundation Inc. (http://www.22q.org)
- Nationwide Children's Hospital (http://www.nationwidechildrens.org/22q-deletion-syndrome-support-group)
- VCFS 22q11 Foundation (http://www.vcfsfa.org.au)
- 22q11 Ireland (http://www.22q11ireland.org)
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Where do I find other people with 22q11.2 deletion syndrome?
Other people and families living with 22q11.2 deletion syndrome can be found through support group websites. For example, the Chromosome 22 Central support group has a listing of ways to connect with other families living with the condition on their site: http://www.c22c.org/vcfs.htm. Other wonderful support groups who provide family contact options are listed below. You can also ask your genetic counselor if other families with 22q11.2 deletion syndrome in your area are willing to be contacted.