There are over 7,000 currently known rare diseases impacting the lives of more than 25 million Americans and their families. Information can be scarce, resources limited, and patients are scattered around the nation, creating an environment in which individuals and families face a myriad of challenges in every state. It can also be 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.
In 2015, the first state advisory council on rare diseases was created in North Carolina by patients, caregivers, families and providers. A “Rare Disease Advisory Council” or “RDAC” is an advisory body providing a platform for the rare community to have a stronger voice in state government. RDACs address the needs of rare patients and families by giving 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 and cures. Advocates in fourteen states have since successfully established RDACs, and rare disease stakeholders in several other states have sought to establish them to better represent their community and articulate its need to those in power.
Through the support of NORD, alongside patient organizations and the other members of the rare disease community, momentum around RDACs is growing. Since 2019, eight governors have signed RDAC legislation into law. RDACs are showing enormous promise in each of these states to address barriers that prevent individuals living with rare diseases from obtaining proper treatment and care for their conditions. But many are in their infancy and just becoming operational.
NORD’s Project RDAC is designed to optimize the existing RDACs and to increase the number of RDACs across the country. Under this initiative, NORD will provide opportunities for the RDACs to collaborate with each other on a regular basis, create educational resources to guide RDACs at every step of their journey, and help additional states pass legislation to create high functioning RDACs.
If you would like to learn more or talk with the Policy team at NORD about how to get involved, please contact us at [email protected]