The Utah Rare Disease Advisory Council

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, 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.

Duties of the RDAC

  • Advising the Legislature and state agencies regarding services and care for individuals with a rare disease
  • Providing recommendations to the the Legislature and state agencies on improving access to treatment and services for individuals with a rare disease
  • Identifying best practices to improve care and treatment for individuals with a rare disease.

Council Members

  • Physician and/or researcher who specializes in rare disease, including at least one from the University of Utah
  • Individuals who have a rare disease or are the parent/caregiver of an individual with a rare disease
  • Representatives from one or more rare disease patient organizations that operate in the state; and
  • A representative from the Department of Health

Current Members

To Be Announced
Please submit a letter of interest and a resume or curriculum vitae to Kim Hart. Materials submitted will be considered for possible appointment.

Meetings and Notes

2021

Members meeting

Frequently Asked Questions

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.

What is a RDAC?

A Rare Disease Advisory Council (RDAC) acts as an advisory body that provides the rare community with a stronger voice in state government. RDACs give stakeholders an opportunity to make formal recommendations to state leaders on critical rare disease issues including the need for increased awareness, diagnostic tools and access to affordable treatments and cures.

Why is a RDAC important?

Decisions are made in state government that affect the entire rare community. For example, states play a critical role in ensuring rare disease patients have access to the health care providers, services and treatments they need to thrive, as well as the design of their Medicaid program benefits and regulation of some health insurance plans. RDACs provide a forum for discussion of these important issues.

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