The Grace Wilsey Foundation has put together a fantastic video!
Rare is not an excuse:
Please share!
Rare is not an excuse:
Please share!
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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.
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NGLY1 Deficiency Research
In June 2012, the Freeze Lab pioneered research into the clinical treatment of the rare disorder, N-glycanase deficiency.
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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.
Monday, November 24, 2014
Sunday, November 9, 2014
2nd World Conference on Congenital Disorders of Glycosylation for Families and Professionals
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, November 8, 2014
NGLY1 Deficiency Video
The Grace Wilsey Foundation has created an informational video to answer the question: "What is NGLY1 Deficiency?"
Please share with all those whom might be interested:
Please share with all those whom might be interested:
