HB211: Rare Disease Advisory Council did not pass this year.
March 16th, 2019: As the Utah 2019 Legislative Session wraps up, we have reason to celebrate, and reason to keep hard at work. HB211, the proposal for a Rare Disease Advisory Council, did not survive financial appropriations due to statewide budget issues. We will try again as soon as possible. Thank you to Representative Lee Perry and Senator Luz Escamilla of Utah for sponsoring, Commissioner Stan Summers for testifying, UT RAN Ambassadors Justine Case and Jennifer Christensen Summers and all of the legislators who supported us unanimously this year. We won’t give up on Utah having a RDAC. Watch for Rare diseases community events and opportunities to support efforts throughout the year. We’ll be back at the Capitol next year.
March 4th, 2019: The Senate Health & Human Services committee passed HB211 unanimously this morning! Thank you to all for your support and letters. The committee Chair mentioned the outpouring of public support! Let your own Senator know what a Rare Disease Advisory Council would mean for you before the bill is on the full Senate floor!
A huge thank you to the bill sponsors, Representative Lee Perry and Senator Luz Escamilla, and to Stan Summers for speaking in support of the bill. A special thank you to Jen & Talan Summers for being the motivation behind the bill. Thank you to Justine Case of the Utah Rare Action Network for your collaboration with RUN. Thank you Heidi Wallis for joining in support of the RDAC today!
Watch & Learn: HB211 Passed the Utah House Unanimously!
Watch & Learn: Utah HB211: Rare Disease Advisory Council
ABOUT RAN
The mission of the Rare Action Network ® (RAN) is to connect and empower a unified network of individuals and organizations with tools, training, and resources to become effective advocates for rare diseases through national and state based initiatives across the United States.
Contact Information:
Jennifer Summers, Utah Rare Action Network State Ambassador
Jennifer.summer@rareaction.org
Justine Case, Utah Rare Action Network State Ambassador Justine.case@rareaction.org
ABOUT RUN
RUN stands for the Rare & Undiagnosed Network. We’re a group of advocates, patients, families, researchers, and healthcare providers who share the same mission and vision: To empower rare and undiagnosed patients and their families with genomic information and community through advocacy, networking and support.
Contact information:
Gina Szajnuk (Zanik)
Co-founder and Executive Director
E: ginaszajnuk@gmail.com
C: (310) 883-4353
To Read: The Szajnuk Journey
