Posts tagged ‘Undiagnosed’
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#UndiagnosedDay is coming up on April 29th!
Please help us raise awareness for the undiagnosed rare disease community by supporting Undiagnosed Rare Disease Day on April 29th! #UndiagnosedDay What is an undiagnosed condition? A child...
In Honor of #UndiagnosedDay: “Push Through” by Ava Szajnuk
Hi. My name is Ava Szajnuk. Thank you for joining us today to learn about what it is like to live with a rare or undiagnosed disease. I...
RARE Cast by Global Genes: “A Young Rare Disease Advocate Discusses Life with an Undiagnosed Condition”
April 29 is Undiagnosed Rare Disease Day. It is a day when advocates raise awareness among the general public and policy makers about the emotional, physical, and financial...
RUN’s Educational Series: RARE Evolution with Recursion
RUN is excited to share a video from our first RUN Educational Series with Recursion Pharmaceuticals. This event was designed to inspire, motivate, and spark collaboration among the rare...
2019 RUN’s NBA Initiative #RUNNBA
The Utah Jazz will honor 32 rare and undiagnosed children on the court as National Anthem Buddies on March 2nd, 2019. Derrick Favors, Rudy Gobert, Joe Ingles and...
University of Utah Health: Autoimmune Neurology Patient Day
“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...
“Undiagnosed: Avery’s Battle” by Alyssa Langston
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...
Miracle Flights: Kenneth’s Story
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...
A Major Cable Network Wants to Hear From You
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...
Documentary Series looking for Undiagnosed Patients
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...