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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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Mar 11
0

Cristina Might speaks at UAB for Rare Disease Day

By admin | Events, Rare Disease | No Comments
For Rare Disease Day 2018, Cristina Might, president of NGLY1.org, presented at the University of Alabama Birmingham about how the challenges with coordinated care are particularly magnified in cases of...
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Nov 16
0

Cristina Might Speaks to the Rare Disease Caucus

By NGLY1.org | Public Policy, Rare Disease | No Comments
Cristina Might, President of NGLY1.org, spoke on Capitol Hill this week at the Rare Disease Congressional Congress Briefing.  Her presentation focused on genetic testing and sequencing for rare diseases. The Congressional Rare Disease...
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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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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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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 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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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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