Posts tagged ‘Aware of Angels’
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Asia Skye Atwater
Hi. my name is Alicia Atwater and I’m fundraising for my niece Asia Atwater’s funeral expenses. Fundraiser for Season Atwater by Alicia Simons Atwater : Asia Skye Atwater...
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...
#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...
#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...
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...
Taylor-12q14.1 Microdeletion Syndrome
Taylor-age 3 Diagnosis-12q14.1 Microdeletion Syndrome Photographs were donated by Season Atwater of Aware of Angels. This story first appeared on Aware of Angels. Our little guy Taylor...
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...
Debbie, Heather & Logan-Miller Syndrome and…
Debbie Jorde: Multiple Sclerosis (MS) Mother to Heather & Logan Heather Madsen: Miller Syndrome, ADHD, Autism, ciliary dyskinesia (PCD), Hearing Impairment Logan Madsen: Miller Syndrome, ASD, ciliary dyskinesia...