Posts tagged ‘Rare Disease’
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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...
RUN Education Series
We are thrilled to announce our new RUN Education Series coming in 2019! We are excited to expand our programming and to continue to meet the needs of...
Watch #RUNNBA: Utah Jazz National Anthem Buddies
RUN’s #RUNNBA: Utah Jazz National Anthem Buddies Watch our #RUNNBA video and experience what it was like to be on the court of the Utah Jazz! In 2015,...
#UndiagnosedDay Celebrates Undiagnosed Diseases Network (UDN)
“Solving Medical Mysteries Through Team Science” – UDN Zarko’s Story: Genomic Medicine In Action “Zarko Stanacev experienced years of mysterious debilitating symptoms. He applied to NIH’s Undiagnosed Diseases...
April 21st: Salt Lake City Half Marathon on Saturday
Flyer donated by Erica Braymen, Ecosyse Join us as we cheer on awareness for undiagnosed rare diseases! Please join the Rare and Undiagnosed Network (RUN) at the finish...
Rachel Nielsen: Admitted For Serious Infection and Prepping for Surgery
Kate Nielsen received a call this morning at 1:00a that her daughter, Rachel, does in fact have a bacteria infection in her central line. She will have it...
Rachel Nielsen: Harmons Cooking School Experience from Make-A-Wish
Special thanks to Chef Evan Francois and Photographer Renata Stone. Thank you to everyone at Harmons Cooking School. Thank you to Bob Leibo and everyone at Make-A-Wish. I...
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...