Summary
Organization name
Joubert Syndrome & Related Disorders Foundation
Tax id (EIN)
52-1871536
Address
9 DORENFELD CTPETALUMA, CA 94952
Phone
(732) 886-6379
What is Joubert Syndrome?: Joubert syndrome is a rare genetic disorder affecting the cerebellar region of the brain which controls balance and coordination. Individuals with Joubert Syndrome and Related Disorders often suffer severe neurological problems resulting in issues with balance and coordination, mobility, speech and feeding issues. They are often visually impaired and are at heightened risk of developing serious kidney and liver disease sometimes requiring organ transplants.
The Joubert Syndrome & Related Disorders Foundation (JSRDF) is celebrating our 20th year of providing information about the disorder to families all over the world! In this next year, we will be putting on our bienniel conference in Minneapolis, MN and going through a major re-design of our website.
The JSRDF is an international network of parents who share knowledge, experience, and emotional support. The foundation plays an important role in educating physicans and increasing public awareness.
CHECKS CAN BE MAILED TO: JSRDF c/o Jon Morgan, 414 Hungerford Drive, Suite 252, Rockville, MD 20850
Organization name
Joubert Syndrome & Related Disorders Foundation
Tax id (EIN)
52-1871536
Address
9 DORENFELD CTPhone
(732) 886-6379