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NORD supports the establishment of well-organized, high-functioning Rare Disease Advisory Councils in every state.
A Rare Disease Advisory Council (RDAC) acts as an advisory body that gives the rare disease community a stronger voice in state government. These councils are established through state law, driven by the advocacy of the rare disease community, and bring together a diverse group of stakeholders on a regular basis to discuss and develop solutions to issues impacting a state’s rare disease community. The first RDAC was created in North Carolina in 2015 by advocates and families who were driven to make a difference and has since inspired the creation of councils in 29 additional states. With the support of NORD, various patient organizations, and stakeholders in the rare disease community, RDACs are enabling states to strategically identify and address barriers that prevent individuals living with rare diseases from accessing adequate and effective treatment and care for their condition. In 2024, three states joined the RDAC community.
Why do states need an RDAC?
With more than 10,000 known rare diseases, it is difficult for state policymakers and government officials to have an in-depth understanding of the needs of their rare disease community. This lack of awareness contributes to common and harmful obstacles that rare disease patients face, such as delays in diagnosis, misdiagnosis, lack of treatment options, high out-of-pocket costs, and limited access to medical specialists. At NORD, we believe state governments are uniquely positioned to address these needs in ways that align with their population’s demographics and health care landscape. RDACs share this strategic advantage, as each council is tailored to meet the specific needs of its state. With an RDAC in place, state laws and regulations that affect the rare disease community can be developed through collaboration between government officials and those directly impacted by rare diseases, ultimately helping to improve health outcomes for rare disease patients.
NORD’s Project RDAC
To support the creation and effectiveness of RDACs in raising awareness and informing public policy, NORD launched Project RDAC in November 2020. The goal of Project RDAC is to optimize existing state RDACs and support states in enacting and implementing robust RDAC legislation. Through this work, NORD has developed tools and resources to help RDACs at every stage of their lifecycle based on feedback from the existing RDACs and rare disease community. More details about Project RDAC, including tools and resources, are available on NORD’s website.
Because RDACs are tailored to each state’s unique needs, NORD has not assigned grades but instead provides an overview of their status.
One in 10 Americans lives with rare disease, many of whom fight a daily battle to access the care and support they need. Your gift to the National Organization for Rare Disorders (NORD®) funds life-changing programs and helps us advance policies and research to ensure that everyone gets the care they need AND deserve.