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Documentary Series looking for Undiagnosed Patients

August 7, 2018 7:13 pm

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The New York Times Magazine’s long-running Diagnosis column, written by Dr. Lisa Sanders, has undertaken an exciting new crowd-sourcing experiment in which you— the reader— can write in to help diagnose patients dealing with real-time medical mysteries. These...

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“Undiagnosed is a Diagnosis” by Gina and Ava Szajnuk

May 29, 2018 3:45 pm

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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...

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2018 RUN’s NBA Initiative: NBA Teams Hosted Rare and Undiagnosed Families!

May 28, 2018 10:40 am

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The  Utah Jazz  honored 30 rare and undiagnosed children and their siblings on the court as National Anthem Buddies on March 17th! Ricky Rubio and Alec Burks donated...

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#RUN2U Program: University of Utah School of Medicine’s Pediatric Medicine Interest Group

May 27, 2018 4:28 pm

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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...

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Global Gene’s RARE Daily: Learn more about RUN, our Mission and our Family

May 27, 2018 10:29 am

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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...

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Global Genes RARE Cast: When “Undiagnosed” Is Your Diagnosis

May 18, 2018 10:34 am

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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...

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Are you Undiagnosed or have a Medical Mystery?

May 17, 2018 8:45 pm

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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....

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Progeria Research Foundation Announces Collaboration and Supply Agreement with Eiger BioPharmaceuticals

May 16, 2018 8:19 pm

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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...

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RUN & S1LY: The Connect for Hope Project

May 15, 2018 10:05 am

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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!...

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FDNA Releases New Findings for Sanfilippo Syndrome Resulting from Genomics Collaborative Partnership

May 14, 2018 8:52 pm

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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...

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