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.

Rare Disease Day

February 27, 2025
4:30 – 7:30 PM
Recursion (41 North 400 West, SLC)

Please join us on Thursday, February 27 for our “Evening of Hope” Rare Disease Day event, hosted by organizations including Recursion, Rare & Undiagnosed Network, ARUP, BioHive, BioUtah, and the Utah Rare Disease Advisory Council.

The event will kick off with refreshments and social time, followed by welcoming remarks from leaders like Tracy George of ARUP, Kelvyn Cullimore of BioUtah and Aimee Edwards of BioHive. Don’t miss an engaging panel with patients and advocates sharing their powerful stories.

RSVP

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.