• NGLY1 in The New Yorker!

    Open science and social media were key in the discovery and growth of the NGLY1 rare disease community. Article by Seth Mnookin.

  • NGLY1 Deficiency Research

    In June 2012, the Freeze Lab pioneered research into the clinical treatment of the rare disorder, N-glycanase deficiency.

  • NGLY1 Families Connect

    On February 28, 2014, researchers and 5 NGLY1 families from across the world met for the first ever symposium on N-glycanase deficiency.

Saturday, January 31, 2015

Eric Topol's "The Patient Will See You Now" cites NGLY1

Saturday, January 31, 2015   No comments
Eric Topol's new book, The Patient Will See You Now, is an excellent read on the future of medicine and the era of engaged patients. The NGLY1 community has since its inception been a model of how it's possible to push the science forward with engaged patients and technology. It is a great...

Saturday, January 24, 2015

2015 Running for Rare Diseases

Saturday, January 24, 2015   No comments
A diagnosis is the first step toward a cure.  Bertrand, Victoria and Winston Might are proud to partner with Pam Lynch from Genzyme on the 2015 Running for Rare Diseases Team to support the Undiagnosed Diseases Network. NGLY1.org is proud to partner with the 2015 Running for Rare Diseases...