The Joubert Syndrome Foundation is an international network of parents who share knowledge, experience and emotional support. They offer a networking list, a newsletter, that is published four times a year, a play a role in educating physicians and their support team, and work to increase public awareness of Joubert Syndrome.
The Joubert Syndrome Foundation matches parents who wish to tallk with other parents whose child has similiar problems, they also provide a new parent packet that includes the newsletter, medicial journal articles, and the networking list. There are conference videos available, call for charges. They also host a national conference; call for further details.