BioUtah Recognizes 2023 Rare Disease Day
March 2, 2023
BioUtah on Feb. 28 joined Utah’s rare disease community, including patients, families and advocates, in recognizing 2023 Rare Disease Day at an inspirng event hosted at Recursion headquarters in Salt Lake City. Recursion CEO, Chris Gibson, along with BioHive Executive Director Aimee Edwards, kicked off the evening’s program which featured a panel of young rare disease patients who told their emotional stories from diagnosis to persevering amid the challenges of their conditions.
Kelvyn Cullimore, president and CEO of BioUtah, provided remarks and introduced the Vice Chair of the Utah Rare Disease Advisory Counci (RDAC), Gina Zanik. Zanik, a mother of three rare disease children, has long been of champion of the cause as the co-founder and executive director of the Rare and Undiagnosed Network or RUN. BioUtah administers the RDAC as a grantee under the Utah Department of Health and Human Services.
We honor Utah’s rare disease community on Rare Disease Day, and every day, as we continue to work together to promote medical innovation and advance care and cures,” added Cullimore.
One in ten individuals in the United States and approximately 350,000 Utahns have a rare disease.
View the Governor’s Declaration HERE.
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