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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We proudly invite our NGLY1-CDG community to the NGLY1-CDG Scientific and Family Conference on February 23-25, 2018 in San Diego, CA. The 2018 event is co-organized by Sanford Burnham Prebys Medical...
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Carrie Ostrea, NGLY1.org's Executive Director, participated in the inaugural National Center for Advancing Translational Sciences (NCATS) Advocacy Day on June 30, 2017, learning about their resources and programs and how they can...
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The 2nd Annual Congenital Disorders of Glycosylation (CDG) Patient, Parent, Physician meeting took place in New Orleans in May 9-10, 2017. Amour Fund along with Dr. Morava at Tulane University...
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Watch LIVE as the National Organization for Rare Disorders (NORD) honors the people, organizations, and innovators at their 2017 Rare Impact Awards on May 18 in Washington, D.C. (View livestream here...
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Join the Mark2CureAThon on May 11/12 to search for clues on a rare disease by identifying genes, diseases, drugs, and the relationships between these based on literature surrounding the NGLY1. ...
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Our advocacy team will be participating in the upcoming BIO International Convention in San Diego next month! We are excited to learn about the latest innovative technologies and introduce our…
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