For Rare Disease Day 2018, Cristina Might, president of NGLY1.org, presented at the University of Alabama Birmingham about how the challenges with coordinated care are particularly magnified in cases of...
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Cristina Might, President of NGLY1.org, spoke on Capitol Hill this week at the Rare Disease Congressional Congress Briefing. Her presentation focused on genetic testing and sequencing for rare diseases. The Congressional Rare Disease...
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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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Carrie Ostrea, NGLY1.org's Executive Director, participated in the inaugural National Center for Advancing Translational Sciences (NCATS) Advocacy Day on June 30, 2017, learning about their resources and programs and how they can...
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Recently I attended a “Rare on the Road Leadership Tour” in Kansas City, MO. It popped up on my Facebook feed, I asked people about it, and said to myself,...
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Dr. Matt Might, Chief Scientific Officer of NGLY1.org, presented at the June 28, 2017, NIH-NCATS meeting on data registries in rare disease. His presentation was entitled "NGLY1: Data as a Drug." Dr....
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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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