Posts tagged ‘Utah Rare’
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Recursion Pharmaceuticals Ribbon Cutting Ceremony
In 2014, the Utah Rare Executive Committee met in the first Recursion conference room when they had only 13 employees. Together, we started a coalition for rare disease stakeholders...
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...
Fourth Annual Utah Rare Symposium
Our Fourth Annual Utah Rare Symposium was a huge success this past weekend! Thank you to our 2018 Utah Rare Chair, Tristin West! Thank you to all of...
RUN’s 2018 Rare Disease Day!
RUN’s 2018 Rare Disease Day events were incredible! Thank you to the Rare Disease Legislative Advocates and the EveryLife Staff for allowing me to share our journey and...
Stockton-Undiagnosed
Stockton: Age 2 Diagnosis: Undiagnosed USA Stockton is our Undiagnosed Medical Mystery, though we prefer to call him our medical miracle. Though his root condition (undiagnosed genetic syndrome)...
Lashay-Undiagnosed
Lashay: Age 16 Diagnosis: Undiagnosed (POTS, Chronic Illness) USA After being exposed to all sorts of variables(even being bitten by a raccoon) in Costa Rica, Lashay returned home...
Bertrand-N-glycanase deficiency (NGLY1)
Bertrand: 8 years-old Diagnosis: N-glycanase deficiency USA Bertrand was born full-term via natural delivery. His birth weight was a surprising 5 lbs. 12 oz. (an earlier ~36 week...
Lucy-Sotos Syndrome (Cerebral Gigantism)
Lucy: Age 5 Diagnosis: Sotos syndrome or Cerebral Gigantism USA When Lucy was born, the doctors kept saying something was wrong but didn’t know what. She wasn’t hitting any milestones....
Ciara-Eosinophilic Fasciitis, Linear Scleroderma, Sjogren’s Syndrome
Ciara Webster: Age 28 Diagnosis: Eosinophilic Fasciitis, Linear Scleroderma, Sjogren’s Syndrome USA, Utah Hi, my name is Ciara. In April of 2006, at the age of 16, I...
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...