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Blog

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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Aug 03
0

Registration open for 2018 NGLY1-CDG Scientific and Family Conference

By NGLY1.org | CDG, Events, NGLY1 Community | No Comments
We proudly invite our NGLY1-CDG community to the NGLY1-CDG Scientific and Family Conference on February 23-25, 2018 in San Diego, CA. The 2018 event is co-organized by Sanford Burnham Prebys Medical...
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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 07
0

2nd Annual CDG Patient, Parent, Physician meeting

By NGLY1.org | CDG, Events | No Comments
The 2nd Annual Congenital Disorders of Glycosylation (CDG) Patient, Parent, Physician meeting took place in New Orleans in May 9-10, 2017. Amour Fund along with Dr. Morava at Tulane University...
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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 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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