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October 24, 2018 9:14 pm
21It 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...
October 18, 2018 10:14 am
11RARE 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)...
October 17, 2018 10:04 am
16Miracle 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...
October 13, 2018 5:54 pm
10A 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...
October 9, 2018 11:04 pm
8We 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...
August 7, 2018 7:13 pm
25The 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...
May 29, 2018 3:45 pm
17Welcome 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...
May 27, 2018 4:28 pm
13Do 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...
May 27, 2018 10:29 am
4Rare 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...
May 18, 2018 10:34 am
9Global 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...