Joubert Syndrome & Related Disorders Foundation (JSRDF)

  • A nonprofit organization that has been providing information about the disorder to families all over the world since 1992
  • An international network of parents who share knowledge, experience, and emotional support
  • Educates physicians and their support teams as well as increasing public awareness
  • Supports research endeavors worldwide and provides members with the latest healthcare recommendations, in collaboration with our Scientific Advisory Board.
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URL: 
http://www.jsrdf.org/

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.