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Chromosome 18 Registry and Research Society Overview
The Chromosome 18 Registry and Research Society, founded in 1990, is a lay advocacy organization composed primarily of the parents of children with one of the chromosome 18 abnormalities. We are also proud to count among our members, affected individuals, extended family members and professionals. Membership is open to any interested person. Our work is supported by memberships and donations from individuals and charitable organizations. We have met the strict criteria for fiscal responsibility set by the Combined Federal Campaign. We provide: Newsletters, Annual Conference, Parent Network,
Syndrome support groups, Regional support groups,
Education, Syndrome information, Public advocacy. We fund research, including clinical research.
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My daughter was not diagnosed with 18p- syndrome until she was 6 1/2 years old. After the diagnosis, there was no support and very little information provided by the local medical community due to the rarity of the disorder. When I found the Chromosome 18 Registry and Research Society I finally was ...
The Chromosome 18 Registry is a genuine grass roots organization that has been supporting our family in many ways for almost 20 years. They are our number 1 source for medical information and research and have become the support network we turn to when we need another family with which to talk...
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the registry has been with us since the beginning and has always been a great resource and brought us much comfort. We have attended many conferences and made many friends. This rare disorder can leave you feeling alone and confused and the other families really help you feel normal. Here it ok to ...
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