We found out our daughter had Chromosome 18q- in 2013. None of the doctors knew much about it at all, and we were so lost. We found the C18 Registry and Research Society and gained a new family along with invaluable information to help the doctors help our daughter. The research is ongoing and always helping so many families stay on top of their childrens' health and well-being, and it's a wealth of information for the doctors we all see. I don't know where we'd be without the help of the Registry and the wonderful doctors who work there to help our families.
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- EIN 74-2557551
- office@chromosome18.org
- 210-657-4968
- 7155 Oakridge Drive San Antonio TX 78229 USA
- http://www.chromosome18.org
- Facebook page
- Chromosome18Reg
- Add to Favorites
We found out our daughter had Chromosome 18q- in 2013. None of the doctors knew much about it at all, and we were so lost. We found the C18 Registry and Research Society and gained a new family along with invaluable information to help the doctors help our daughter. The
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jshight, Client Served
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Nonprofit Overview
Causes: Birth Defects & Genetic Diseases Research, Health, Specifically Named Diseases Research
Mission: 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.
Target demographics: Families that deal with a Chromosome 18 abnormality.
Geographic areas served: We have 4,000 families across the Country and 2,000 around the World that we support.
Programs: Dissemination of information regarding chromosome abnormalities to physicians and families, and funding research regarding chromosome 18 abnormalities