The Joubert Syndrome Related Disorders Foundation is an international network of parents who have been providing knowledge, experience, and emotional support to families around the world since 1992. They aim to help individuals with Joubert syndrome and related disorders by offering healthcare recommendations, resources, grants, and a community of support.
The foundation is entirely volunteer-run and relies on generous donations to continue their mission of serving families and children impacted by the challenges of living with Joubert syndrome. They strive to raise awareness, provide medical information, and connect families with the necessary resources to navigate their journey.
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