• 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 press. Show all posts
Showing posts with label press. Show all posts

Wednesday, July 23, 2014

Boston Public Radio covers NGLY1

Wednesday, July 23, 2014   No comments
Boston Public Radio 07/21/2014

The segment on NGLY1 starts at 1:36:39.

Seth Mnookin, a professor in the MIT graduate program in science writing, talked about his new piece in The New Yorker titled "One of a kind: What do you do if your child has a condition that is new to science?"

Tuesday, July 15, 2014

NGLY1 in "The New Yorker"

Tuesday, July 15, 2014   No comments

Journalist Seth Mnookin dedicated over two years to research and chronicle the discovery of N-glycanase deficiency and the growth of the NGLY1 community.

It is an honor to have an ultra-rare disease brought to public attention with such compelling and thorough reporting.

On behalf of all NGLY1 patients and their families, including those yet undiagnosed: Thank you, Seth!

You can read the full article HERE.