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“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...
RUN Event at Primary Children’s Outpatient Center on January 31st!
Gina (me) will be in Salt Lake City for a few days to watch the Milwaukee Bucks play the Utah Jazz next week! I could not pass up the opportunity...
“The love of my life…Becky Lockhart and Cruxfeldt-Jacob Disease” by Stan Lockhart
16 years before she died, Becky had a miscarriage at 10 weeks. The pregnancy was unexpected, but we were excited to have child number four in our home....
“Congenital Generalized Lipodystrophy (AGPAT2) and Alani” by Rachel Daniels
Born in January 2014 was my sweet Alani. Just over 5 lbs, she was so small and frail but so beautiful. She had an awfully large belly to...
MyGene2 and RUN partnership. Please vote today!
Please take the time to vote for MyGene2 in the Open Science Prize!! Your vote matters! They are breaking down the silos! They are RUN’s dream! They will publicly share...
Updated Rare Disease Facts and Figures from NORD
Updated Rare Disease Facts and Figures from the National Organization for Rare Disorders (NORD) Below are the updated facts NORD will be using in 2017. The following facts have vetted...