This topic has information for parents about Joubert syndrome.
Joubert Syndrome & Related Disorders Foundation
The Joubert Syndrome & Related Disorders Foundation is an international network of parents who share knowledge, experience, and emotional support. The foundation offers a networking list, newsletter, and a biennial conference.
NINDS Joubert syndrome information
The mission of the National Institute of Neurological Disorders and Stroke is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world.
European Journal of Human Genetics - Joubert syndrome and related disorders
The European Society of Human Genetics is a nonprofit organization. Its aims are to promote research in basic and applied human and medical genetics, to ensure high standards in clinical practice and to facilitate contacts between all persons who share these aims.