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“Undiagnosed is a Diagnosis” by Gina and Ava Szajnuk
Welcome to the world of the unknown. My oldest daughter, Ava Szajnuk, is growing up so fast and her voice is so important for the next generation. In...
#RUN2U Program: University of Utah School of Medicine’s Pediatric Medicine Interest Group
Do you know what it is like to live with a rare or an undiagnosed rare disease? Please join the University of Utah School of Medicine’s Pediatric Medicine...
Global Gene’s RARE Daily: Learn more about RUN, our Mission and our Family
Rare Leader: Gina Szajnuk, Co-founder and Executive Director of Rare and Undiagnosed Network Written by Daniel Levine on the Global Gene’s RARE Daily on March 5, 2018 Photo...
Global Genes RARE Cast: When “Undiagnosed” Is Your Diagnosis
Global Genes RARE Cast: When “Undiagnosed” Is Your Diagnosis by Daniel Levine and Levine Media Group April 13, 2018 Before most rare disease patients have a name to...
Are you Undiagnosed or have a Medical Mystery?
As some of you already know, Netflix and The New York Times are currently filming a documentary series about people with undiagnosed medical conditions. The series is inspired by Dr....
Progeria Research Foundation Announces Collaboration and Supply Agreement with Eiger BioPharmaceuticals
Progeria Research Foundation Announces Collaboration and Supply Agreement with Eiger BioPharmaceuticals FDA Guidance on Lonafarnib Approval for Progeria Sought Children with Ultra-Rare, Fatal, Rapid-Aging Disease Die of Heart...
RUN & S1LY: The Connect for Hope Project
When you have a rare or undiagnosed condition, finding someone who gets it is a game changer. Introducing The Connect for Hope Project: Our new partnership with S1LY!...
FDNA Releases New Findings for Sanfilippo Syndrome Resulting from Genomics Collaborative Partnership
FDNA Releases New Findings for Sanfilippo Syndrome Resulting from Genomics Collaborative Partnership Highlighting the continued success of an FDNA initiative accelerating breakthroughs in precision medicine May 14, 2018...
The Peterson Family: Chase “Jasper” Battle With Battens
Chase “Jasper” Battle With Battens Chase The Cure February 28, 2018 In 2015, after a recommendation from Chase’s 1st grade teacher we had Chase seen by a pediatric...
Watch #RUNNBA: Utah Jazz National Anthem Buddies
RUN’s #RUNNBA: Utah Jazz National Anthem Buddies Watch our #RUNNBA video and experience what it was like to be on the court of the Utah Jazz! In 2015,...