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Utah Life Sciences News & Events

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.

“Thank you to Governor Spencer Cox for making Rare Disease Day official in Utah,” said Zanik. “It is a day dedicated to raising awareness about rare diseases, the impact on patients, and the need for research and treatment.”
Also on hand to mark the occasion were representatives from the offices of Senator Mike Lee and Congressman Chris Stewart. In a statement, Lee noted, “Utah is an incredible place for innovation in the bioscience community. On this Rare Disease Day, I’m grateful for the researchers, doctors, and patients working to make the world a healthier place for all of us by pushing for better diagnostics, treatments, and cures for those suffering from rare diseases.”

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.