Gina Zanik (Szajnuk), Vice Chair, presented on behalf of the Rare Disease Advisory Council (RDAC) to the Utah Life Sciences Innovation Caucus on January 17th, 2023.

Watch: RDAC Presentation to the UTAH LIFE SCIENCES INNOVATION CAUCUS

To learn more about the Utah RDAC, please visit: Utah Rare Disease Advisory Council

About: The Utah Rare Disease Advisory Council (RDAC) was formed under HB 106 during the 2020 legislative session of the Utah Legislature (Utah code 26-1-41). The RDAC is an advising body that provides a platform for those in Utah’s rare disease community to have a stronger voice in state government. Several other states have established RDAC which have resulted in providing stakeholders an opportunity to make recommendations to state leaders on critical issues including the need for increased awareness, diagnostic tools and access to affordable treatments.

What is a Rare Disease? Defined as a condition or disorder that affects fewer than 200,000 individuals in the United States. There are approximately 7,000 rare diseases and 25-30 million Americans are affected by these rare disorders. While individuals with certain disorders may be rare, the total number of people with a rare disease is large. Information and resources are limited for these individuals and their families creating a myriad of challenges. Obstacles include delayed diagnosis, misdiagnosis, lack of treatment options, high medical care costs and limited access to medical specialists. The Utah RDAC has been established to provide in-depth understanding for government officials and policymakers. The goal is to address barriers preventing individuals living with rare diseases from obtaining proper treatment, resources and care for their condition.