For Medical Professionals
First and foremost, we want to thank you for visiting our website and seeking to learning more about Joubert Syndrome. Considering the crucial role of medical professionals, such as yourself, in the lives of people with JS, we are eager to provide you with all the information you’ll need.
Please browse through our website to find more information about JS and how to provide the best medical care for your patients and their families. Navigating this diagnosis can be very challenging for families, so we also encourage you to direct them to our website.
Please consider printing this one page Family Welcome Letter to distribute to new patients and their families.
- Updated healthcare recommendations for individuals with JS and related disorders (released in October 2019).
- Short videos from our medical experts that provide great information about the healthcare recommendations, research findings, and relevant medical specialties, including genetics, gastroenterology, nephrology, and ophthalmology.
If you have further questions about clinical guidance or current research, please reach out to our scientific advisors directly or send an email to info@jsrdf.org and we can connect you.
If you wish to become more involved in the foundation, including attending the conference, please reach out to any member of the current Board of Directors.
For any other questions or concerns, please reach out to us by email at info@jsrdf.org. Our volunteers will do their best to steer you in the right direction.
Thank you again for providing support to your patients and their families!