The Grace Wilsey Foundation has put together a fantastic video!
Rare is not an excuse:
Please shar...
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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...
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:
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