• NGLY1 in The New Yorker!

    Open science and social media were key in the discovery and growth of the NGLY1 rare disease community. Article by Seth Mnookin.

  • NGLY1 Deficiency Research

    In June 2012, the Freeze Lab pioneered research into the clinical treatment of the rare disorder, N-glycanase deficiency.

  • NGLY1 Families Connect

    On February 28, 2014, researchers and 5 NGLY1 families from across the world met for the first ever symposium on N-glycanase deficiency.

Showing posts with label event. Show all posts
Showing posts with label event. Show all posts

Sunday, November 9, 2014

2nd World Conference on Congenital Disorders of Glycosylation for Families and Professionals

Sunday, November 9, 2014   No comments

Lyon, FRANCE

August 29 - 30, 2015


The CDG Community is planning “The 2nd World Conference on Congenital Disorders of Glycosylation for Families and Professionals: a challenging story of sugar trees”, early in advance. Due to relevant operational reasons, getting a detailed tentative agenda is of high importance.

This cutting-edge family and medical event will be held in 29 and 30 August 2015, in Lyon (France). It should be noted that this congress is organized in parallel with the Annual Symposium SSIEM that will be held in Lyon, 1-4 September 2015 (France).

“The 2nd World Conference on Congenital Disorders of Glycosylation for Families and Professionals: a challenging story of sugar trees” is expected to draw more than 250 attendees consisted of families and the main CDG professional Key Opinion Leaders coming from all countries. Speaker presentations will cover a diverse range of themes previously voted on.

View the outstanding speaker lineup from the 2013 event here:

Saturday, July 19, 2014

"Integrating Glycoscience"

Saturday, July 19, 2014   No comments

This upcoming November 2014 at the annual joint meeting for the Society of Glycobiology and the Japanese Society for Carbohydrate Research, there will be an entire session dedicated to NGLY1!

The theme for the conference is "Integrating Glycoscience From Biology and Chemistry to Medicine".

NGLY1 session presenters will include researchers Tadashi Suzuki, Hudson Freeze, Hamed Jafar-Nejad, as well as two NGLY1 parents!  The Super Matts: Matthew Might and Matt Wilsey.

The NGLY1 session starts at 2:45pm on Tuesday, November 18th.  These talks are sure to be thought-provoking and inspiring.

If you'll be in Honolulu, Hawaii, don't miss it!