Recent Posts

Page 9 of 50

Clinical Trial: Primary Hyperoxaluria (PH)

November 7, 2018 10:00 am

11

    OxThera is a biopharmaceutical company based out of Stockholm, Sweden, working to improve the lives of those with Primary Hyperoxaluria (PH). Our experimental drug, Oxabact®, is...

Continue Reading

University of Utah Health: Autoimmune Neurology Patient Day

November 3, 2018 11:12 pm

18

“The Autoimmune Neurology Patient Day was an opportunity for patients, family, and friends to learn more about the latest advances in Autoimmune neurology and to share experiences with...

Continue Reading

“Undiagnosed: Avery’s Battle” by Alyssa Langston

October 24, 2018 9:14 pm

21

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...

Continue Reading

#RUN2U: RARE TAMU at Texas A&M University

October 18, 2018 10:14 am

11

  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)...

Continue Reading

Miracle Flights: Kenneth’s Story

October 17, 2018 10:04 am

16

  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...

Continue Reading

A Major Cable Network Wants to Hear From You

October 13, 2018 5:54 pm

10

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...

Continue Reading

RUN Education Series

October 9, 2018 11:04 pm

8

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...

Continue Reading

Documentary Series looking for Undiagnosed Patients

August 7, 2018 7:13 pm

25

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...

Continue Reading

“Undiagnosed is a Diagnosis” by Gina and Ava Szajnuk

May 29, 2018 3:45 pm

17

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...

Continue Reading

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

May 27, 2018 4:28 pm

13

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...

Continue Reading