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“Undiagnosed: Avery’s Battle” by Alyssa Langston

October 24, 2018 9:14 pm

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It started when he was 6 months old. He was getting fevers and frequent ear infections like clockwork. Every 28-30 days on the dot, his fever would spike...

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#RUN2U: RARE TAMU at Texas A&M University

October 18, 2018 10:14 am

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  RARE TAMU is a student organization at Texas A&M University that works to spread awareness of RARE diseases. They are a National Organization for Rare Disorders (NORD)...

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Miracle Flights: Kenneth’s Story

October 17, 2018 10:04 am

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  Miracle Flights​ provides individuals and families free medical flights to distant, specialized care and valuable second opinions. We have a #curefordistance. Below you will hear directly from...

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A Major Cable Network Wants to Hear From You

October 13, 2018 5:54 pm

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A Major Cable Network is seeking individuals who are battling unknown medical conditions for a new ground-breaking television series. If you have run out of options and don’t...

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RUN Education Series

October 9, 2018 11:04 pm

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We are thrilled to announce our new RUN Education Series coming in 2019! We are excited to expand our programming and to continue to meet the needs of...

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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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#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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