Special congratulations to NGLY1 researcher Hamed Jafar-Nejad. He is the recipient of the Society for Glycobiology's 2017 Glycobiology Significant Achievement Award! Thank you Hamed for your dedication and passion for our...
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We are excited for Noah as he takes his next "Run for Rare" across Europe. The awareness he has brought for children with rare diseases is awe-inspiring. The 33-year-old will...
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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…
The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 2017 Rare Impact Awards on May 18 in Washington, D.C….
Cristina Might, executive director of NGLY1.org and mom to the first NGLY1 patient, and Jennifer Leftwich, mom to Gage, participated in rare disease events this week in Washington, D.C., in…
Clinicians, researchers and advocates for diseases rare and common met at the White House for a day of science and bowling on Friday, December 16th in honor of NGLY1 patient...
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