Information and Resources

Important Urgent information

For patients with Alström Syndrome admitted to the hospital or outpatient facilities, even if for routine minor surgery with anesthesia or sedation,  it is vitally important that medical and nursing staff is aware that hypoxia (low blood oxygen levels) can occur very rapidly in patients with Alström Syndrome.   In some patients, this has lead to life threatening heart/lung problems because of the reduced reserve capacity of the cardio respiratory system.  Please inform your physician and medical team to use all precautions for monitoring oxygen saturation.

LISTEN NUTRITION” – A YouTube recording on food and nutrition for young people with Alstrom Syndrome

College Resources for Students with Disabilities guidebook

Guide to scholarships and financial aid for students with disabilities

Jamie’s Resource List for the Visually Impaired

External resources

Please note:
We do not control or endorse the information presented on these Web sites. They are listed for informational purposes only.

ASI Executive Director
Robin Marshall
14 Whitney Farm Road
Mount Desert, ME  04660  USA

ASI Scientific Advisory Board
Clair Francomano, MD
Harvey Institute for Human Genetics/GBMC
6701 N. Charles Street, Suite 2326
Towson MD 21204 USA
Phone:  443-849-3131

ASI Family Outreach Coordinators
Carrol Birchall – UK
Gina Denbow – Canada

Sibling Support Coordinators
Lynn and Cassie Johnston – Texas USA