Posts tagged ‘Season Atwater Photography’
#RUN2U Program: University of Utah School of Medicine’s Pediatric Medicine Interest Group
Do you know what it is like to live with a rare or an undiagnosed rare disease? Please join the University of Utah School of Medicine’s Pediatric Medicine...
Upcoming RUN Involved Events and Projects
Rare and Undiagnosed Network (RUN), a rare and undiagnosed disease patient advocacy organization, and the rare disease community of more than 350 million people worldwide, are preparing...
Layla-548kb duplication at band 15q26.3
Layla: Age 4 Diagnosis: 548kb duplication at band 15q26.3 USA Defying all Odds!Sweet, beautiful, Layla Anne was born a little baby, soon to defy all odds. She arrived into...
Landon-INAD(Infantile Neuroaxonal Dystrophy)
Landon-age 4 Diagnosis-INAD(Infantile Neuroaxonal Dystrophy) Diagnosis Found through whole exome sequencing-INAD (Infantile Neuroaxonal Dystrophy) USA “Landon is 4 years old now! There are no words to express how thankful...
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...
Utah Rare’s Journey
It was an honor to share my journey with Utah Rare at the Global Genes RARE Patient Advocacy Summit along with Sharon King of Taylor’s Tale and the NC Rare Disease Network. The breakout...