Rare Disease Advisory Councils
A Rare Disease Advisory Council (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.
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 provides opportunities for the RDACs to collaborate with each other on a regular basis, creates educational resources to guide RDACs at every step of their journey, and helps states pass legislation to create high functioning RDACs.
History of RDACs
In 2015, the first state advisory council on rare diseases was created in North Carolina by patients, caregivers, families, and providers.
Advocates in twenty-five states have since established RDACs, and rare disease stakeholders in several other states have sought to establish them to better represent their community and articulate their challenges and needs 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 2020, eleven 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 still in their infancy and just becoming operational.
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