Thank you to the Utah Jazz and Governor Cox for honoring Rare Disease Day and the work of the Rare and Undiagnosed Network (RUN) and the Utah Rare Disease Advisory Council! It was a very special evening for all of us. It was wonderful to see our rare families. There were a lot of hugs […]
More than 1,000 bills and resolutions were introduced during the 45-day Utah legislative session from January 20 to March 6. The RDAC Legislative Committee screened all bills and resolutions for relevance to the rare and undiagnosed disease community and prioritized its efforts based on the RDAC Policy Guide and subject matter it deemed urgent in […]
Recursion is a Salt Lake City–based company using AI and scientific innovation to discover and develop new medicines for people living with diseases that often have few or no treatment options, including rare diseases. Around the world, an estimated 300 million people are affected by a rare disease, yet only about 5% of rare diseases […]
By: Stacy Allen Most people think of hope as something passive, a feeling you hold onto while waiting for things to improve. But real hope, the kind that changes outcomes, looks very different. It’s active. It’s uncomfortable. And often, it shows up before there are any answers at all. That’s what I’ve come to understand […]