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Blog

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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May 05
0

Join Mark2CureAThon to Find Discoveries for NGLY1

By NGLY1.org | Events | No Comments
Join the Mark2CureAThon on May 11/12 to search for clues on a rare disease by identifying genes, diseases, drugs, and the relationships between these based on literature surrounding the NGLY1. ...
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May 02
0

NGLY1.org at the 2017 Bio International Convention

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

Our advocacy team will be participating in the upcoming BIO International Convention in San Diego next month! We are excited to learn about the latest innovative technologies and introduce our…

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May 01
0

Noah Coughlan is Running For Rare Through Europe

By NGLY1.org | NGLY1 Champions, Rare Disease | No Comments
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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Recent Posts

  • 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
  • NGLY1 Family Article Excerpt: ‘Take care of yourself first’

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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