Executive Director, Cystinosis Foundation

"Valerie V. Hotz is the Executive Director of the Cystinosis Foundation. She directs the day-to-day affairs of this non profit organization with a constituency of global stakeholders. Her work includes managing patient advocacy programs while collaborating with an international consituency of physicians, patients and families, governmental agencies, lawmakers, and global patient advocacy groups. Valerie’s efforts include providing program development with the goal of improving the quality of life and long term outcomes for Cystinosis patients and their families. After her nephew Joshua was diagnosed with this ultra rare condition in 1982, Valerie assisted her mother, Jean Hobbs Hotz, to establish the Cystinosis Foundation, the first patient support group for this condition. Valerie earned her Juris Doctorate from the University of San Francisco School of Law and an A.B. in Rhetoric with Honors from the University of California, Berkeley.


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