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Utah Life Sciences News & Events

BioUtah Recognizes Rare Disease Day

March 1, 2021

Today, BioUtah recognizes Rare Disease Day – its patients, families, healthcare providers, advocates, policymakers and drug manufacturers – all dedicated to making a difference in the fight against rare disease.

Here in Utah, we are working closely with our partners in the rare disease community to raise awareness and harness resources to support the goal of improving the lives of people living with a rare disease and advancing diagnostics and treatments. Importantly, BioUtah and our rare disease partners have successfully pushed for authorization and funding of a Utah Rare Disease Advisory Council (RDAC). Appropriations for the RDAC, which Governor Cox signed into law as part of the recent state budget bill, paves the way to begin implementation of the council. 

“As a rare disease patient, I am excited about starting the Utah Rare Disease Advisory Council to raise awareness for rare diseases every day, not just on rare disease day,” said Matt Pearl, Utah Rare Action Network Volunteer State Ambassador.

One in 10 Utah residents have one of the more than 7,000 known rare diseases.

“With this council, we look forward to focusing on the needs of rare disease patients here in the state and supporting industry efforts to bring innovative medicines to the market,” said Kelvyn Cullimore, president and CEO of BioUtah.

Utah joins 15 others states that have an RDAC: Alabama, Connecticut, Illinois, Kentucky, Massachusetts, Minnesota, Missouri, New Hampshire, New York, Nevada, North Carolina, Ohio, Pennsylvania, Tennessee, Utah, and West Virginia. The National Organization for Rare Disease (NORD) formally launched Project RDAC at the end of 2020 to optimize the existing RDACs and help more states pass councils. For more information check out NORD’s Project RDAC website here: https://rarediseases.org/rdac-overview/.

The official Rare Disease Day is always the last day of February, but in practice, it’s important that we come together throughout the year to give voice to the more than 300 million worldwide with a rare disease. NORD is the sponsor of Rare Disease Day in the U.S., alongside its sister organization, the European Organization for Rare Disorders, which organizes the official international campaign.