Archive for the ‘Undiagnosed’ Category
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Today is Undiagnosed Rare Disease Day! #UndiagnosedDay!
What is Undiagnosed Day? Undiagnosed Day is to celebrate those living with an undiagnosed disease and their families as well as to remember the ones we have lost....
It’s official! Thank you to Governor Spencer Cox for his declaration of April 29th to be Undiagnosed Rare Disease Day in Utah! #UndiagnosedDay
For More Information for April 29th, 2023: Undiagnosed Rare Disease Day #UndiagnosedDay What is Undiagnosed Day? Undiagnosed Day is to celebrate those living with an undiagnosed disease and...
RUN’s Data Collection Program Community Webinar
PATIENT-OWNED DATA TO ACCELERATE DIAGNOSIS, TREATMENTS & CURES FOR UNDIAGNOSED DISEASE See how sharing patient information will collectively make a difference in finding a diagnosis for undiagnosed disease...
Searching for a Diagnosis by Daniel Levine
April 21, 2022 Many people living with a rare and undiagnosed disease face a prolonged diagnostic odyssey that can be financially and emotionally taxing as they seek to...
#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...
HB435: Undiagnosed Children Insurance Coverage Bill Passed!
“A bill that I informally named “Marley & Tyler’s Bill” passed yesterday! It will help provide coverage to undiagnosed children. My recently diagnosed daughter and a boy named...
“What is the hardest part of being undiagnosed?” by Gina Szajnuk
What is the Hardest Part of Being Undiagnosed?” by Gina Szajnuk Photo by Season Atwater, Aware of Angels When The Mighty and the National Organization for Rare Disorders...
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...
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...
RUN’s 2018 Rare Disease Day!
RUN’s 2018 Rare Disease Day events were incredible! Thank you to the Rare Disease Legislative Advocates and the EveryLife Staff for allowing me to share our journey and...