Posts tagged ‘Undiagnosed Rare Disease’
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Press Release: Utah Jazz
Jazz to Recognize Children from Rare and Undiagnosed Network at March 2 Game Youth to Stand with Jazz, Bucks During National Anthem SALT LAKE CITY (February 28, 2019) –...
HB211 Passed the Utah House Unanimously!
HB211, establishing a Rare Disease Advisory Council, passed the Utah House of Representatives unanimously on Friday, February 15th, 2019! Community members gathered to watch and listen from the...
Utah HB211: Rare Disease Advisory Council
Action Alert: The House of Representatives will consider HB211 this Friday, February 15, 2019 at 2:30, in the House Chamber. Community members can gather to watch and listen...
“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...
MediaPlanet: The NBA Pairs up with a Grassroots Nonprofit for Rare Diseases
We recently participated in Mediaplanet’s Rare Diseases campaign where we united with likeminded industry leaders to educate Americans on the urgent need to gain public, private and federal...
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,...
The Diagnostic odysseys: Undiagnosed is a diagnosis
The Diagnostic odysseys: Undiagnosed is a diagnosis By Eleonora Passeri, Anne Lawlor, Polly Moyer, and Amanda Riggs Rackerby. Photo by Alessia Torregrossa, Finestre di Assisi/Windows of Assisi ...
#RUN2U Event on April 27th: University of Utah School of Medicine’s Pediatric Medicine Interest Group
Flyer donated by Erica Braymen, Ecosyse Do you know what it is like to live with an undiagnosed rare disease? Please join the University of Utah School...
#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...