Wherever you are in your journey, we can help.

Since 1992, the Joubert Syndrome & Related Disorders Foundation has been helping families all around the world. We are an international network of parents who share knowledge, experience, and emotional support. Join our community today. Together we can do so much.

What is Joubert Syndrome?

Joubert syndrome (JS) is a disorder defined by three primary findings:

  1. A specific abnormality in the part of the brain characterized by underdevelopment of the cerebellar vermis and additional brain stem differences giving the appearance of the molar tooth sign (MTS)
  2. Hypotonia (low muscle tone)
  3. Developmental delays/intellectual disabilities of varying degrees

Support and Guidance

Guide for first time families

Welcome new families! Rest assured that you are not alone and have come to the right place to gain knowledge and support about living with and understanding Joubert Syndrome.

Learn more

JSRDF Conference

Our family and medical conference takes place every other year. The conference is a place where you can come to get the latest updates from doctors and researchers around the world. It is a great place to meet other families and there are many sessions that help deal with daily living as well as life planning.

Learn more

Connect with us

Please contact us with any questions regarding Joubert Syndrome. We are here to help in anyway we can and we are also looking for volunteers to help us grow and provide even more for our community!

Learn more