Check out this powerful video about how our first NGLY1 Deficiency patient was found, and the incredible Might family (founders of NGLY1.org) who work tirelessly to help others affected by NGLY1…
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For Rare Disease Day 2018, Cristina Might, president of NGLY1.org, presented at the University of Alabama Birmingham about how the challenges with coordinated care are particularly magnified in cases of...
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Cristina Might, President of NGLY1.org, spoke on Capitol Hill this week at the Rare Disease Congressional Congress Briefing. Her presentation focused on genetic testing and sequencing for rare diseases. The Congressional Rare Disease...
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SAN DIEGO, Sept. 05, 2017 (GLOBE NEWSWIRE) -- Retrophin, Inc. (NASDAQ:RTRX) today announced that it has entered into a three-way Cooperative Research and Development Agreement (CRADA) with the National Institutes...
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The NGLY1 Foundation (NGLY1.org) is pleased to announce the appointment of Carrie Ostrea as Executive Director as of July 1, 2017. “Bringing Carrie in to lead the team represents a...
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Special thank you to the Domo, Inc. product team for donating their time and energy to put together our M&M’s-filled specimen collector cups for the recent Annual Clinical Genetics Meeting in…
Cristina Might, Founder and Executive Director of NGLY1.org, shared her story and perspective at the recent Federation of American Societies for Experimental Biology (FASEB) at a Capitol Hill briefing this month in…
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