NGLY1
  • Contact Us
  • Newsletter
  • Blog
  • What is NGLY1?
    • Symptoms
    • Diagnosis
    • Prognosis
  • Family Support
  • Healthcare Professionals
    • Patient Care – Medical
    • Patient Care – Support
  • Research
    • Genetics and Pathway
    • Protocol Collaboration with the NIH
    • Samples available from Coriell
  • What is NGLY1?
    • Symptoms
    • Diagnosis
    • Prognosis
  • Family Support
    • NGLYL1 Handbook
  • Healthcare Professionals
    • Patient Care – Support
    • Patient Care – Medical
    • NGLY1 Handbook
  • Research
    • Genetics and Pathway
    • Protocol Collaboration at the NIH
    • Samples available from Coriell
    • Research Journal Articles
  • Contact Us
  • Newsletter
  • Blog
  • What is NGLY1?
    • Symptoms
    • Diagnosis
    • Prognosis
  • Family Support
  • Healthcare Professionals
    • Patient Care – Medical
    • Patient Care – Support
  • Research
    • Genetics and Pathway
    • Protocol Collaboration with the NIH
    • Samples available from Coriell

Blog

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...
Read More
Aug 21
0

Congratulations to NGLY1 researcher, Hamed Jafar-Nejad!

By NGLY1.org | NGLY1 Champions, Researchers and Clinicians | No Comments
Special congratulations to NGLY1 researcher Hamed Jafar-Nejad. He is the recipient of the Society for Glycobiology's 2017 Glycobiology Significant Achievement Award! Thank you Hamed for your dedication and passion for our...
Read More
Aug 06
0

PUBLISHED: Mitochondrial function requires NGLY1

By NGLY1.org | CDG, NGLY1 Deficiency, Research and Science | No Comments
Recently published on Pubmed. Mitochondrial respiratory chain (RC) diseases and congenital disorders of glycosylation (CDG) share extensive clinical overlap but are considered to have distinct cellular pathophysiology. Here, we demonstrate...
Read More
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...
Read More

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

Archives

  • January 2020
  • December 2018
  • November 2018
  • May 2018
  • April 2018
  • March 2018
  • February 2018
  • November 2017
  • October 2017
  • September 2017
  • August 2017
  • July 2017
  • June 2017
  • May 2017
  • April 2017
  • March 2017
  • February 2017
  • December 2016
  • November 2016
  • October 2016
  • March 2016
  • February 2015
  • January 2015
  • November 2014
  • October 2014
  • July 2014
  • June 2014
  • October 2013
  • September 2012

Categories

  • CDG
  • Events
  • Media
  • NGLY1 Champions
  • NGLY1 Community
  • NGLY1 Deficiency
  • NGLY1 Families
  • NGLY1.org
  • Partners
  • Precision Medicine
  • Public Policy
  • Rare Disease
  • Research and Science
  • Researchers and Clinicians
  • Resources
  • Studies

Meta

  • Log in
  • Entries feed
  • Comments feed
  • WordPress.org

Contact Us

CDG CARE
P.O. Box 38832
Colorado Springs, CO 80937
info@cdgcare.org
+1 (866) 295-7910

Sign up for our newsletter

  • This field is for validation purposes and should be left unchanged.
Privacy Policy
Donate to NGLY1.org

© 2020 NGLY1.org