Council Established to Address Rare Disease Challenges
The RDAC was established through House Bill 2380 and signed into law on May 12, 2025. This makes Arizona the 31st state with a dedicated rare disease advisory body. The council convenes physicians, patients, caregivers, researchers, and industry representatives. They develop policy recommendations, boost public education, and advocate for better access to specialists, diagnostics, treatments, and affordable coverage.
Ingle’s Lived Experience and Leadership
Living with rare conditions—including algoneurodystrophy, dystonia, and endometriosis—for over two decades, Ingle brings firsthand insight and proven leadership. Professional Roles and Achievements
As Vice President of the International Pain Foundation, Editor of iPain Living magazine, a member of the Global Genes Leadership Council, and a steering committee participant in the Arizona Chronic Care Together Coalition, she has advanced patient-centered initiatives locally and nationally. Moreover, as a George Mason University psychology graduate, Ingle has authored ten books, including the Amazon best-seller From Wheels to Heals. She has also testified before legislatures, helped pass Arizona bills SB1162 and SB1469, and received over 45 advocacy awards.
Ingle’s Commitment
“Being appointed to the RDAC is a profound honor and a call to action for the rare disease community,” said Ingle. “Having faced misdiagnosis and treatment barriers myself, I’m committed to shaping policies that meet patients’ and families’ real needs. Therefore, with the legislature and council, we will create more accessible, individualized, and effective healthcare.” Endorsement from ADHS
“Your expertise will greatly benefit policy recommendations and systems evaluations for those impacted by rare diseases, their families, and the state,” said Cassandra Webb, Program Manager, Comprehensive Cancer Control, Arizona Department of Health Services.
Council’s Mission and Timeline
Consequently, the RDAC will gather public testimony, educate policymakers, and propose strategies to the Governor and Legislature to address the challenges faced by the estimated 1 in 10 Arizonans with rare diseases. Ingle’s term begins immediately.
For more information or to get involved, visit the Arizona Department of Health Services website or contact barby@internationalpain.org.
About Barby Ingle
Barby Ingle is a leading voice in chronic pain and rare disease advocacy, serving as Vice President of the International Pain Foundation and a prolific author and speaker. Residing in Pinal County, Arizona, with her husband, Ken Taylor, Ingle dedicates her work to empowering patients through education, policy reform, and community support. Ingle is a candidate for Arizona House of Representatives LD7. Learn more at barbyingle.com.
About the Arizona Rare Disease Advisory Council (RDAC)
Established in 2025 (HB2380), the RDAC advises on policies to improve diagnosis, treatment, and support for individuals with rare diseases in Arizona, promoting collaboration across healthcare, research, and government sectors.
###
Media Source:
Ken Taylor, President
International Pain Foundation
ken@internationalpain.org
480-845-1456