Cystinosis Foundation
Organization URL(s)
cystinosis@ucsd.eduwww.cystinosisfoundation.org/
Other Contact Information
604 Vernon Street
Oakland,
CA 94610
800-392-8458 (Voice - Toll-free)
559-222-7997 (Voice)
Description
The Cystinosis Foundation is a nonprofit organization formed with the objectives of raising awareness among the general public and the medical community, as well as raising funds for research into the causes of this rare metabolic disease. Cystinosis, a genetic disorder, afflicts from 200 to 300 children in the United States. The Foundation will respond to inquiries from parents of victims and other concerned individuals. The Foundation is establishing a national directory of information from cystinosis-affected families which will be made available to doctors working in research. The Foundation serves as a support group to families afflicted with cystinosis. The Foundation is supported through donations from individuals and companies.
Online Resources
- Facts About Cystinosis
http://www.cystinosisfoundation.org/brochure2.html
Print Resources
The Foundation produces several information sheets on cystinosis related topics. Serial publication: Cystinosis Foundation (newsletter), quarterly--news on research, fund raising, and future projects as well as an advice column for parents.