Learn more about NGLY1 deficiency


Grace and other affected patients like her have two damaging mutations in their NGLY1 gene. An international team of clinicians and researchers has come together in an unprecedented way of open collaboration to understand the disease and to develop a cure.

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Stem cell core team at Gladstone Institutes.


The NGLY1 story and team have garnered interest from CNN, The San Francisco Chronicle, Genetics in Medicine, The New Yorker, and others. Please click “Read More” to view all of the notable coverage.

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The foundation is led by a diverse group of people from science, medicine, business, and public service. We are incredibly proud of our board and advisors and think you will be as well. Please learn more about their backgrounds.

Meet The Team

Meeting with Dr. Tadashi Suzuki and team at RIKEN.


We are an all volunteer organization and 100% of the foundation's operating budget is supported by the board. This means that 100% of your donation goes toward fulfilling our mission - to cure NGLY1 Deficiency.

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We love hearing from family, friends, and those passionate about rare diseases. Our mission is to change the way diseases are discovered, researched, and treated. Please join us!

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