Special thank you to the Domo, Inc. product team for donating their time and energy to put together our M&M’s-filled specimen collector cups for the recent Annual Clinical Genetics Meeting in…
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Heartfelt thanks to the Boston Celtics and Rare & Undiagnosed Network RUN for giving CDG advocate Liam and his family a NBA Experience bringing awareness to the rare disease and…
One of the many highlights of the recent Annual Clinical Medical Genetics conference was getting to meet rare disease patient Nic Volker, subject of a Pulitzer Prize winning article and inspiration behind the Nicholas…
Cristina Might, Founder and Executive Director of NGLY1.org, shared her story and perspective at the recent Federation of American Societies for Experimental Biology (FASEB) at a Capitol Hill briefing this month in…
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….
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