Kira Chaney

02/22/2026

02/22/2026

“Evening of HOPE” agenda for our Utah Rare Disease Day event! Please join us on Tuesday, March 3rd, for our fourth annual event, hosted by Recursion Pharmaceuticals in partnership with the Rare & Undiagnosed Network RUN.

The event will kick off with refreshments and social time, followed by speakers from our Utah rare disease stakeholders, rare and undiagnosed patients, caregivers and patient advocates sharing their powerful stories.

We hope to see you there!
RSVP: https://luma.com/rare-disease

Details:
Tuesday, March 3rd
5:00p - 8:00p MT (Doors open at 4:30p)
Recursion
41 S 400 W, Salt Lake City, UT 84101

Much Love,
Gina Zanik (Szajnuk) (Co-Founder/Executive Director of RUN & Chair, Utah Rare Disease Advisory Council (RDAC),
Ryan Kelly (Chief Communications Officer at Recursion) & the organizing committee

02/06/2026

‼️Breaking News: Rare Pediatric Disease PRV Program Reauthorized by Congress!

After a two-year campaign to reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) Program, the rare disease community’s relentless advocacy has paid off.

Congress has passed the Labor, HHS, and Related Agencies Appropriations bill, effectively reauthorizing the PRV Program for five years while also funding a number of other critical healthcare agencies.

We applaud the reauthorization of the PRV Program and renewed investments in critical health research and public health programs.

Thank you to the congressional champions who have partnered with our rare disease community to secure these advances. While significant work remains to enable all those living with rare diseases to thrive, today’s progress will accelerate innovation, expand access to life-changing therapies, and offer renewed hope to children and families whose futures once seemed beyond reach.

To learn more about the full healthcare package, please visit our website: https://everylifefoundation.org/congress-passes-five-year-reauthorization-of-rare-pediatric-disease-prv-program/

10/09/2025

Join us at Urban Arts Gallery in the Gateway for the SLC premiere of "Life of Lucas", a powerful documentary following Lucas — a young boy living with…

08/21/2025

RDAC Legislative Advocacy

Rebecca Yates (far left) was invited to present about copay accumulators during the 2024 October interim session. Her comprehensive presentation is a deep dive into why we favor ban of copay accumulator programs.

Listen to Rebecca's full statement starting at 20:50 here: https://le.utah.gov/av/committeeArchive.jsp?mtgID=19456

08/18/2025