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.
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.
Please submit a letter of interest and a resume or curriculum vitae to Kim Hart. Materials submitted will be considered for possible appointment.
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.
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.
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.
For more information visit the National Institutes of Health (NIH) website or the National Organization for Rare Disorders (NORD) website