Check out this powerful video about how our first NGLY1 Deficiency patient was found, and the incredible Might family (founders of NGLY1.org) who work tirelessly to help others affected by NGLY1…
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SAN DIEGO, Sept. 05, 2017 (GLOBE NEWSWIRE) -- Retrophin, Inc. (NASDAQ:RTRX) today announced that it has entered into a three-way Cooperative Research and Development Agreement (CRADA) with the National Institutes...
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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...
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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...
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The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 2017 Rare Impact Awards on May 18 in Washington, D.C….
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…
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…
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