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. In 2015, the first RDAC was created in North Carolina by patients, caregivers, families and providers. Since then, lawmakers have established councils in an additional twenty states to help better represent the rare disease community. With the support of NORD, other 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 obtaining proper treatment and care for their condition.
With over 7,000 known rare diseases, it is difficult for state policymakers and government officials to have an in-depth understanding of the entire rare disease community. This lack of awareness contributes to common 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. While each state’s RDAC is tailored to meet the specific needs of that state, with RDACs in place, state laws and regulations that affect the rare disease community can be developed in partnership with experts from the rare disease community, ultimately helping to improve health outcomes for rare disease patients.
To ensure that more states have strong RDACs to help inform public policy, NORD launched Project RDAC in November 2020. The goal of Project RDAC is to optimize the existing state RDACs and help more states enact robust RDAC legislation. Through this work, NORD has developed tools and resources to help RDACs at every step of the process based on feedback from the existing RDACs and rare disease community. For more information on Project RDAC or to access the various tools and resources NORD has developed, please visit https://rarediseases.org/projectrdac/.
Given that RDACs are still a relatively new concept, NORD did not assign grades to states. This section is intended to provide an overview of the activity around RDACs in all states at the time of launching the State Report Card in 2022.
