Washington, DC, November 18, 2020—With a mission of empowering and equipping the rare disease community to effectively engage decision-makers within their state governments, the National Organization for Rare Disorders (NORD®) has launched an initiative that will assist in building well-organized, high-functioning Rare Disease Advisory Councils (RDACs) in every state—“Project RDAC.” The inaugural public meeting in support of Project RDAC will be held virtually on December 16.
First established by North Carolina rare disease patients, families and health care providers in 2015, an RDAC provides stakeholders with a forum to make recommendations to state leaders on matters of importance to the rare disease community, including the need for increased awareness, access to diagnostic tools, and affordable treatments and cures. Through strong RDACs, the rare disease community and government officials can partner to develop the resources necessary to strategically address barriers, allowing states and their citizens to thrive.
“RDACs have outstanding potential for addressing obstacles that prevent individuals living with rare diseases from obtaining proper treatment and care for their conditions,” said Rachel Sher, Vice President, Policy and Regulatory Affairs for NORD. “Since 2019, eight governors have signed RDAC legislation into law, bringing the total number of RDACs established by states to 14, and momentum is continuing to grow,” Sher said.
Project RDAC will offer opportunities for existing RDAC members to connect and collaborate on a regular basis, provide educational resources to guide RDACs at every step of their journey, and help additional states pass legislation to create high-functioning RDACs.
On December 16, NORD will virtually convene a meeting of the rare disease community, members of existing RDACs, and advocates from states actively pursuing legislation to enact an RDAC. This event will feature an “Early Successes and Challenges of RDACs” panel, breakout sessions for networking, and information that can guide future efforts to introduce and enact RDAC legislation into law across the country. To register for the meeting, click here.
For more information on Project RDAC and how to get involved with a Rare Disease Advisory Council in your state, visit the https://rarediseases.org/rdac-overview/ or email policy@rarediseases.org.