Celebrating Advocacy, Action and a Year of Success Building Rare Disease Advisory Councils

7 Rare Disease Advisory Councils Established Since Launch of NORD’s Project RDAC

In 2015, the first rare disease advisory council was created in North Carolina by patients, caregivers, families, and providers. This year, the National Organization for Rare Disorders (NORD), the leading advocate for the over 25 million Americans living with a rare disease, is celebrating the growth and success of rare disease advisory councils throughout the country.

A Rare Disease Advisory Council (RDAC) provides a platform to strengthen the voice of the rare disease community in state government. Through Project RDAC, an initiative officially launched in late 2020, NORD is working to optimize existing RDACs and increase the number of states with Councils to ensure the needs of the rare disease community are being met.

“The first year of Project RDAC directly led to the creation of seven new RDACs across the country, which is an impressive reflection of the strength of the rare disease community and the interest and engagement of volunteers, state decisionmakers, patients and families. NORD is so proud of the new RDACs established, and greatly looks forward to doing more policy engagement and coalition building next year,” said Peter Saltonstall, CEO and President, NORD.

Project RDAC’s state action and impact to date includes:

57 RDAC coalition meetings
201 patient organizations engaged
254 legislators contacted with action alerts
114 testimonies and letters of support submitted
11 RDAC bills introduced
7 new RDACs signed into law in 2021

The seven states to pass RDACs in 2021 are Florida, Louisiana, Massachusetts, New Jersey, Ohio, South Carolina, and Virginia.

For more information on RDACs, NORD’s work with state governments throughout the country, and ways to get involved, visit the Project RDAC website.