Every story deserves a chance to be told.
Your donation helps bring life-saving treatments to many others like them.
Where does your donation go?
You’ll help fund essential research that will pave the way for the discovery of life-changing treatments.
We support the Natural History Study at the NIH through coordinating with and supporting the participating NGLY1 families. A high quality Natural History Study is of utmost importance for gathering more insights into the disease as well as for defining endpoints for potential clinical trials.
You’ll help us bring NGLY1 patients, families, and researchers together, and give us the ability to help those in need.
We are working toward setting up the first NGLY1 patient registry, which will bring families a much-needed support network, provide researchers with valuable information, and allow us to locate and reach out to newly-diagnosed patients. We also sponsor NGLY1 families who do not live within reach of important medical treatment and may need financial assistance to travel.
Donate by phone
+1 (650) 646-4591
Donate by mail
Send checks to:
175 S Main Street, Ste 500
Salt Lake City, UT 84111
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A copy of the official registration and financial information may be obtained from the division of consumer services by calling toll-free within the state. Registration does not imply endorsement, approval, or recommendation by the state.