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/

11/14/2025

Meet the RDAC: Kira Chaney, MS. Council Member

Kira is a dedicated patient and political advocate specializing in rare disorders, driven by her own journey navigating healthcare systems as a rare disease patient. Her unique experience combined with an academic background in anthropology, integrative human biology, and an M.S. degree in healthcare administration provide her with a comprehensive understanding of the complex social and medical issues faced by rare disease patients. She is devoted to innovation and the removal of systemic barriers to the diagnosis and treatment of rare disorders.
She is a rare patient and rare advocate looking for ways to help her communities.

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

07/30/2025

On Saturday, July 19th, the Utah Rare Disease Advisory Council proudly participated in a powerful day of service with Canyon Rim Cares.

Alongside hundreds of dedicated volunteers, we helped bring to life a stunning community mural designed by Utah artist Kaylee Rakowski. This vibrant work of art honors individuals from Utah’s rare disease community and serves as a bold visual reminder of their strength, resilience, and the urgent needs they face.

The mural not only celebrates rare disease patients but also raises critical awareness about the challenges they encounter—challenges the Utah RDAC is committed to addressing through policy advocacy and legislative engagement.
We are honored to be part of a community that shows up, speaks out, and paints a brighter future—together.

Canyon Rim is Community

05/31/2025

We have Recursion's "Evening of Hope" - Utah Rare Disease Day 2025 video! A special thank you again to all of our incredible speakers for being there this ye...