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Cystinosis Central


Contact Information

UCSD - Department of Pediatrics
9500 Gilman Drive
MC 0830

La Jolla, CA 92093-0830

619-543-5260 (Voice),
619 543-3565 (FAX),

Internet Resources


Abstract

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.

Publications

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.

Keywords

You may search for other related entries in the database under the following topics.


Notes

1.27.12. inactivated: rare disease; web page does not meet guidelines DK

Audit

Date Entered: 7/1/1997
Date Edited: 1/27/2012
Date Revised: 8/7/2006 10:54:21 AM
Health Referral Number: HR2199
Accession Number: DP91A0860

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