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A Bi-Annual Newsletter for the Non-Ketotic Hyperglycinemia Rare Disease Community & Beyond

Author: Fighting for Fiona & Friends

Dear NKH Supporters,

We’re excited to share a new family initiative taken on by the Fitzpatrick, Nohelty, and Sarb families - a bi-annual newsletter for the NKH community.

The goal of the newsletter is three-fold, to: 1) to share information, 2) increase awareness and 3) together, accelerate progress in the fight against NKH.…

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Models for Accelerating Academic Rare Disease Research and Innovation: A Working Session Hosted by Notre Dame

Author: College of Science

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An interactive working session hosted by Notre Dame to explore how universities can accelerate rare disease research and discovery through innovation, entrepreneurship and cross-sector partnerships.

Co-chairs: 
John Crowley, Chairman and CEO of Amicus Therapeutics and Founding Board Member of Global Genes

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In Honor of the late Dr. Stanley Falkow

Author: Plos Pathogens

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Ralph Isberg, Editorial Advisor and former Section Editor for PLOS Pathogens, remembers his friend, colleague, and mentor Stanley Falkow, and reflects on his contributions to the understanding of bacterial pathogens and his commitment to mentorship.

When I first entered the Falkow lab as a postdoctoral fellow in December 1983, I possessed a strange combination of naivete and arrogance that played to Stanley’s strengths.  This allowed him to shut down the still and extremely small voice in his head that said: “Maybe this is a bad idea.” Only after success occurred, and I imagine only very rarely, did he ever reveal evidence of this voice.…

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Follow up on Rare and Neglected Disease Day 2018

Author: Barb Calhoun

This year’s Rare Disease Day Conference started strong on Friday, February 9th, with exceptional research talks along with patient perspectives on the importance of research for Rare Diseases. NonKetotic Hyperglycinemia, Rare Cancers, Cystic Fibrosis and Niemann Pick Type C were some of the research topics presented. Sadly, Saturday was cancelled due to a snow blockade, but we present great highlights from Friday below.…

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