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Blog

Dec 10
1

NGLY1.org Research update: Generation of an induced pluripotent stem cell line …

By admin | Research and Science, Researchers and Clinicians | No Comments

NGLY1.org is thrilled to be actively involved in this important research! Generation of an induced pluripotent stem cell line (TRNDi002-B) from a patient carrying compound heterozygous p.Q208X and p.G310G mutations…

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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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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 07
1

NGLY1: Data as a Drug Presentation at NIH/NCATS

By NGLY1.org | NGLY1 Families, Rare Disease | One Comment
Dr. Matt Might, Chief Scientific Officer of NGLY1.org, presented at the June 28, 2017, NIH-NCATS meeting on data registries in rare disease.  His presentation was entitled "NGLY1: Data as a Drug." Dr....
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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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Jun 28
0

Announcing Our New Executive Director

By NGLY1.org | NGLY1.org | One Comment
The NGLY1 Foundation (NGLY1.org) is pleased to announce the appointment of Carrie Ostrea as Executive Director as of July 1, 2017. “Bringing Carrie in to lead the team represents a...
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May 15
0

Watch Matt Might, PhD, receive his NORD Impact Award Live

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

  • Lili Torres on NGLY1 Family Story – Marc F
  • Cláudia mãe on Interview with Christina Lam, NGLY1 Specialist
  • Emile najm on NGLY1: Data as a Drug Presentation at NIH/NCATS
  • Kimberly Palma-Ortega on Announcing Our New Executive Director
  • Misak Zetilyan on President Obama congratulates the NGLY1 community

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