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Blog

Apr 16
0

NGLY1.org welcomes Matthew Fox to our Board of Directors

By admin | NGLY1.org | No Comments
The NGLY1 Foundation (NGLY1.org) is pleased to announce the appointment of Matthew Fox to its Board of Directors. “Matt Fox brings years of experience in finance, biotech, drug development and...
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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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Jul 12
0

NCATS Advocacy Day 2017

By NGLY1.org | Events, NGLY1.org, Rare Disease | No Comments
Carrie Ostrea, NGLY1.org's Executive Director, participated in the inaugural National Center for Advancing Translational Sciences (NCATS) Advocacy Day on June 30, 2017, learning about their resources and programs and how they can...
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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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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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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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