Cystinosis Foundation Of California Incorporated

Programs: Education: to raise the awareness of the medical community and general public through medical meetings, the media, and distribution of literature. This includes promoting and advising on the cure cystinosis international registry, the only registry dedicated solely to cystinosis patients. During the year, the foundation paid for traveling and accommodation expenses of medical practitioners, experts, and families coping with cystinosis to attend the eighth international cystinosis congress in manchester, united kingdom. The key aims of the conference is to allow individuals, medical professionals and organizations to share their knowledge across the global cystinosis community in order to further understanding of this ultra rare disease and the necessity of medication compliance among the medical professionals and patient community, and to connect together families and individuals who are coping with the ultra rare disease.

advocate: to educate u. S. Legislators and their staff about cystinosis, encourage support of funding for the national institutes of health and extending the orphan drug act.

educational/public information: the "my view" video, produced in 2012, is a professionally taped and produced video that involved international conference guests expressing ther views about their hope for the future regarding cystinosis. The "my view" video has been distributed to four cystinosis support groups to share with their members for educational purposes.

d-1 $446 - public information: prints and distributes brochures, fact sheets, and newsletters. Also prints and distributes the following publications - 1. "cystinosis coming of age" 2. "nephropathic cystinosis explained to children" (this publication has been translated into four foreign languages). Develops and distributes family board game "nc quest". Maintains message forum for families on website. D-2 $1,000 - grant to organization: cystinosis support group, australian.