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- EIN 04-3323789
- (847) 735-0471
- Po Box 702 Lake Forest IL 60045-0702 USA
- www.cystinosis.org
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Nonprofit Overview
Causes: Education, Health, Specifically Named Diseases Research
Mission: The cystinosis research network is an all volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis.
Programs: The organization establishes and funds fellowships and research grants focusing on clinical and research training in cystinosis.
the organization raises awareness and reinforces strong relationships through representation at national medical conferences, affiliation with other organizations, publication of periodic newsletters and awards or educational scholarships to individuals with cystinosis and their siblings.
the organization provides information and opportunities to network for individuals with cystinosis and their families through participation in a biennial conference on cystinosis. It also supports newly diagnosed and existing families by providing access to world experts via advisory boards, moderation of an email support group and information packets.