University of California, San Francisco (UCSF)

The leading university exclusively focused on health, UCSF is driven by the idea that with the best research, the best education and the best patient care converge, great breakthroughs are achieved.

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http://www.ucsf.edu/

PXE Community

PXE International promotes research driven by, and centered on, people affected by PXE. This research community provides discussion forums for PXEers and researchers to brainstorm, collaborate, and develop studies to better understand the effect of nutrition, diet, and exercise on PXE.

JS-LIFE Research

JS-LIFE is a database designed and supported by the Joubert Syndrome and Related Disorders Foundation (JSRDF) to advance research on the health and well-being of people with Joubert Syndrome. We invite you to collaborate with JS-LIFE participants and their families, disease advocates, medical researchers, and healthcare providers to design a research study to address important issues for people living with Joubert Syndrome. The research study will use information collected and shared in the JS-LIFE database.