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

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...
Read More
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...
Read More
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
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...
Read More
Jul 10
2

Jennifer Leftwich, NGLY1 Parent Advocate’s Road to Leadership

By Jennifer Leftwich | NGLY1 Families, Rare Disease | No Comments
Recently I attended a “Rare on the Road Leadership Tour” in Kansas City, MO.  It popped up on my Facebook feed, I asked people about it, and said to myself,...
Read More
Jul 07
1

NGLY1: Data as a Drug Presentation at NIH/NCATS

By NGLY1.org | NGLY1 Families, Rare Disease | One Comment
Dr. Matt Might, Chief Scientific Officer of NGLY1.org, presented at the June 28, 2017, NIH-NCATS meeting on data registries in rare disease.  His presentation was entitled "NGLY1: Data as a Drug." Dr....
Read More
Jul 05
0

NGLY1 featured in Forbes Magazine article

By NGLY1.org | Media, NGLY1 Families, Rare Disease | No Comments
The Best-Positioned Tech Giant In Healthcare? The Answer Might Surprise You But the name you may hear about least–Facebook–may actually be the company influencing healthcare the most, and may also...
Read More
NextPrevious »

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