NORD supports the establishment of well-organized, high-functioning Rare Disease Advisory Councils in every state and considers them foundational components of thriving rare disease advocacy ecosystems.
What is a Rare Disease Advisory Council (RDAC)?
A Rare Disease Advisory Council (RDAC) is an official state advisory body established through state law or by a governor’s authority that provides the rare disease community with a formal voice in state government. These councils bring together patients, caregivers, health care providers, researchers, and other stakeholders on a regular basis to identify challenges and develop solutions affecting the state’s rare disease community.
Why it matters
With more than 10,000 known rare diseases, state government officials often lack a deep understanding of the complex needs of the rare disease community. This gap in awareness can contribute to delayed diagnoses, misdiagnosis, limited treatment options, high out-of-pocket costs, and restricted access to medical specialists. RDACs help bridge this gap by fostering collaboration between policymakers and individuals directly impacted by rare diseases, ensuring that state laws and regulations are informed by lived experience.
The movement
The first Rare Disease Advisory Council was established in North Carolina in 2015 by advocates and families. Since then, 31 additional states have created councils. In 2025, three more states joined the RDAC community. Each council is designed to reflect the unique needs of its state’s population and health care landscape.
NORD’s support for RDACs
Launched in 2020, NORD’s Project RDAC provides comprehensive support to help Rare Disease Advisory Councils not only survive but thrive. Since its launch, NORD has directly contributed to the creation of approximately 25 of the 33 councils nationwide. Project RDAC offers model legislation, coalition building and management, RDAC implementation support, policy technical assistance, and convenes the only nationwide RDAC collaboration forum through its annual National RDAC Meeting.
More information about Project RDAC, including model legislation, toolkits, and additional resources, is available on NORD’s website.
Why we don’t grade this issue
Rare Disease Advisory Councils are designed to reflect each state’s unique needs, government structures, and policy priorities. Rather than assigning grades, NORD tracks RDAC establishment status and provides targeted support to help states create, strengthen, and sustain effective councils.
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