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.
The research study will be created from the ideas, experiences, opinions, and feedback that your share online. You can be involved in research every step of the way from brainstorming ideas to designing the research plan to sharing the study results. We need all voices to move this research forward!
Please remember that the goal of Mosaic is to design research studies. For general information, support, or educational opportunities about Joubert Syndrome, please visit the JSRDF website: http://www.jsrdf.org/