Community Engaged Network for All (CENA)

Community Engaged Network for All (CENA) is one of 29 projects funded by the Patient Centered Outcomes Research Institute (PCORI) to form a new national resource that will accelerate health research. The new network, which involves millions of Americans, is called PCORnet. Genetic Alliance leads this project, which is a collaborative of eleven disease advocacy organizations, the University of California San Francisco, the University of California Davis, and Private Access.

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http://www.geneticalliance.org/programs/biotrust/cena

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.