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Blog

May 30
26

Superhuman Video: The Might Family

By admin | Media, NGLY1 Families | No Comments

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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Sep 05
1

Exciting News! CRADA with Retrophin, NCATS and NGLY1.org

By NGLY1.org | Media, NGLY1 Deficiency, NGLY1.org, Research and Science | No Comments
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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Aug 31
0

On the Way to a Rare-Disease Cure, Parents Tackle the High Price Tag of Research

By NGLY1.org | Media, Rare Disease | No Comments
This article just published in the Wall Street Journal highlights how online experts and sometimes donated resources let families of all means to launch their own initiatives when it comes to...
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Jul 05
0

NGLY1 featured in Forbes Magazine article

By NGLY1.org | Media, NGLY1 Families, Rare Disease | No Comments
The Best-Positioned Tech Giant In Healthcare? The Answer Might Surprise You But the name you may hear about least–Facebook–may actually be the company influencing healthcare the most, and may also...
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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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Jul 23
0

Boston Public Radio covers NGLY1

By admin | Media | No Comments

Boston Public Radio 07/21/2014 The segment on NGLY1 starts at 1:36:39. Seth Mnookin, a professor in the MIT graduate program in science writing, talked about his new piece in The…

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Jul 16
0

NGLY1 in “The New Yorker”

By admin | Media, NGLY1 Families | No Comments

Journalist Seth Mnookin dedicated over two years to research and chronicle the discovery of N-glycanase deficiency and the growth of the NGLY1 community. It is an honor to have an…

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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 …
  • Research Update: Suggestion that targeting NGLY1 represents a novel anti-melanoma strategy
  • Superhuman Video: The Might Family
  • NGLY1 Family Story – Marc F

Recent Comments

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