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Blog

Mar 29
1

Thank you DOMO for your support!

By NGLY1.org | Events, NGLY1.org, Partners | No Comments

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…

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Mar 28
0

Liam’s NBA Experience with the Celtics

By NGLY1.org | CDG, Rare Disease | No Comments

Heartfelt thanks to the Boston Celtics and Rare & Undiagnosed Network RUN for giving CDG advocate Liam and his family a NBA Experience bringing awareness to the rare disease and…

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Mar 27
0

ACMG Highlights: Meeting Nic Volker

By NGLY1.org | NGLY1.org, Rare Disease | No Comments

One of the many highlights of the recent Annual Clinical Medical Genetics conference was getting to meet rare disease patient Nic Volker, subject of a Pulitzer Prize winning article and inspiration behind the Nicholas…

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Mar 24
0

Capitol Hill briefing showcases NGLY1 and rare disease research

By NGLY1.org | NGLY1 Champions, Public Policy, Researchers and Clinicians | No Comments

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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Mar 15
2

NGLY1.org’s Matt Might Honored at 2017 Rare Impact Awards

By NGLY1.org | Media, NGLY1 Champions, NGLY1 Families, Rare Disease | No Comments

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….

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Recent Posts

  • Why can’t Bertrand Might cry? Scientists offer an answer: missing water channels
  • NGLY1.org Research update: Generation of an induced pluripotent stem cell line …
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Recent Comments

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