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

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

Washington, DC – December 15, 2021 – 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.

About the National Organization for Rare Disorders (NORD)

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 15,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org.