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Ethan-Atypical Hemolytic Uremic Syndrome (aHUS)
Ethan: Age12 Diagnosis: Atypical Hemolytic Uremic Syndrome (aHUS) USA “Ethan was clinically diagnosed as having Atypical Hemolytic Uremic Syndrome (aHUS). A genetic, chronic, ultra-rare disease that can progressively damage vital organs, potentially leading...
Rare Disease Day
The Szajnuk’s celebrated #RareDiseaseDay with a tea party planned by Lucy! She even drew on the white napkins the Undiagnosed awareness ribbon:) Priceless! However, we are missing our...
RUN’s NBA Initiative: 30 Rare & Undiagnosed Children invited for NBA Utah Jazz Appearance
Thank you Boris Diaw for donating 60 tickets through the player donation program to RUN! RUN is currently looking for thirty rare and undiagnosed children to make an...
RUN’s Journey
My name is Gina Szajnuk and I am the mother of three children with an undiagnosed genetic dysfunction. I am also undiagnosed. We live in a diagnostic odyssey...
“Life in the Undiagnosed World: Our Journey for a Diagnosis” by Carrie Bramlee
This story originally appeared on Bullfrog(s) and Butterflies: Life in the Undiagnosed World: Our Journey for a Diagnosis “Take him home and try to give him as normal of...
Wisconsin Rare Events for 2017
2017 WISCONSIN RARE EVENTS Wednesday, January 25th, 2017: Milwaukee Bucks vs. Philadelphia 76ers 7:00 PM – Bradley Center Address: Bradley Center, 1001 N 4th St, Milwaukee, WI 53203 The...
“My Undiagnosed Journey” by Kathleen Ann
I am Kate, and I am 28 years old. Growing up I had a pretty typical childhood; I enjoyed exploring outside with my friends, I adored soccer and...
Rare Disease Week 2017
RUN will be doing the following during Rare Disease Week! Sunday, February 26, 2017: Milwaukee Bucks vs. Phoenix Suns 2:30 PM – Bradley Center Address: Bradley Center, 1001 N...
“RUN Family Changed My Life” by Gina Szajnuk
It has been an emotional few days this week with my trip back to Salt Lake City for the NBA Utah Jazz game against our Milwaukee Bucks. I...