Posts tagged ‘Undiagnosed’
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Governor Herbert’s Declaration! April 29, 2016, as Undiagnosed Day in Utah!
The State of Utah will be the first in the history of the United States to declare April 29th as Undiagnosed Day. Currently, the Undiagnosed community falls under...
Finding a Diagnosis: Deanna’s 11-Year Odyssey
Sometimes, hindsight is 20/20. And when I think back on my life, I realize that I’ve always been sick. I just didn’t see it at first. When I...
Undiagnosed Alliance Flyers
Dear Undiagnosed Alliance, Please find the Undiagnosed Day flyer! Thank you all for your continued support of the Undiagnosed Alliance. I had several more organizations email me to...
Angel’s Hands Foundation Goes Above and Beyond
Mark Kristensen and his Angel’s Hands Foundation (AHR) generously donated towards our very own Rare Teen, Hailey Sampsel, for her travel to the three-week Comprehensive Pain Rehabilitation...
Andrew Scholte: RUNning for Rare Zebras
Andrew Scholte: “For the past two years I have been partnered with Emma, a member of the Gaucher community for the Running For Rare Team. This year I...
A Dedicated Rare Disease Platform to Find Answers. Faster.
We have tirelessly searched for answers and have sacrificed nearly everything for us and for our loved ones with a rare or undiagnosed disease to receive the information and...
Lucy home from ER. Abdominal Migraines with Visual Complications due to Autonomic Neuropathy
Lucy Szajnuk is four years old and lives in pain every single day. I was glad to hear that she did not have papilledema like Ava did in...
Headed to ER with Lucy Szajnuk
Lucy has had stomach pain for a week now. We just figured it was her normal stomach pain. However, she’s begging for a scope. She’s been screaming crying...
Gina’s “Living in a Diagnostic Odyssey, Times Four”
Very excited to share my journey through our diagnostic odyssey this week at the Illumina supported Satellite Symposium at the ACMG Annual Clinical Genetics Meeting in Tampa, FL! ...
Calen-Undiagnosed and Deletion/Duplication Chromosome 19
My name is Calen. I am 15 years old. My parent’s have many ridiculous nicknames for me, but I can best be described as fun loving fury. I...