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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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When our daughter was diagnosed the only people that really knew anything
About her genetic anomaly was the Chromosome 18 Registy and Research organization.
There we are not alone. There we get to meet other families who live with this on a day to day
Basis as we do. And as for treatments...., the ...
I have been a volunteer for this organization for 7 years now and it gets better every year!
Every summer, they have a family conference that is nothing short of awesome! We live in a time of high technology this and high definition that, but there is no technology out there that compares to the ...
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A few weeks ago, we attended our third Family Conference. It's so nice to be able to meet others face-to-face that are walking the same path! The Registry has given us much needed support and guidance and introduced us to many wonderful families. We have participated in the ongoing research ...
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