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, advocates have created councils in many states to better represent the rare disease community. With the support of NORD, patient organizations and the rare disease community, RDACs are enabling states to strategically address barriers that prevent individuals living with rare diseases from obtaining proper treatment and care for their condition.
Why RDACs Exist
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. Although research into rare diseases is advancing and producing new treatments for patients, state policies affecting patient access to these breakthroughs are often determined without consulting individual disease communities.
Without RDACs in place, state laws and regulations that affect the rare disease community will continue to be developed without the consultation of rare disease stakeholders, often leaving rare disease patients at risk for poor health and economic outcomes. With strong RDACs, government officials and the rare disease community can partner to develop the resources necessary to prevent and address barriers in a strategic way that allows states and their citizens to thrive.
NORD’s RDAC Work
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 16 state RDACs and help more states enact RDAC legislation. Through this work, NORD will develop tools and resources to help RDACs at every step of their journey based on feedback from the existing RDACs and rare disease community.
To date, NORD has identified the following key features for starting a successful RDAC. First, it is critical that states working on RDACs include strong stakeholder engagement from the outset. These stakeholders should be committed, as a group, to ensuring the success of the RDAC after it is enacted into law. Second, it is important that the council identify a committed entity to host the council. This will allow for a smooth transition once the council is enacted. Third, NORD recommends the coalition and legislators work together from the outset to determine the purpose and duties for the RDAC. This allows the RDAC to understand its mission and get to work soon after enacted.
Finally, NORD recommends that every council have diverse membership that includes the following representatives:
Currently, every RDAC looks different and reflects the particular needs of that state. Given that information, and the fact that ten out of the sixteen were enacted over the past two legislative sessions, NORD did not assign grades to this section. Instead, additional information about the status of an RDAC in your state can be found here.