Awareness,
Understanding,
and Overcoming
Our goal is to address barriers preventing individuals living with rare diseases from obtaining proper treatment, resources and care for their condition(s).
What is 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 at least 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.
Overcoming Challenges
Rare Disease Families Need Our Help.
The Utah RDAC has been charged to provide in-depth understanding for government officials and patients, health care professionals, insurance providers, and policymakers. Some challenges these families face include:
- Delayed diagnosis or misdiagnosis
- Limited access to care with providers who understand their diseases
- Limited treatment options
- High medical costs for care, including tests and treatment
- Constraints on insurance coverage
- Potential lack of accommodations within society, school, or employment
About the Utah RDAC
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, improved diagnostic tools, and expanded access to affordable treatments.