In the United States, a rare condition is defined as one affecting fewer than 200,000 people nationwide. But when you consider how many people actually live with a rare condition, rare isn’t actually that rare. In Mississippi, for example, one in every ten people has a rare disease. Now, Mississippi is more poised to offer these individuals care and support after the establishment of a rare disease advisory council (RDAC). 

According to Marisa Wexler in AADC News, Governor Tate Reeves recently signed Senate Bill 2156 into law, allowing for RDAC establishment. This bill was championed by the National Organization for Rare Disorders (NORD), as well as Senator Kevin Blackwell and State Representative Jay McKnight. These stakeholders all recognize the importance of providing an avenue for rare disease support, education, and understanding. 

What is a Rare Disease Advisory Council?

You might be asking yourself, “What exactly is a rare disease advisory council?” Don’t worry—we’ll lay out the details. 

In its yearly State Report Card, NORD explains that a rare disease advisory council:

“Acts as an advisory body that gives the rare disease community a stronger voice in state government. With the support of NORD, other patient organizations and stakeholders in the rare disease community, RDACs are enabling states to strategically identify and address barriers that prevent individuals living with rare diseases from obtaining proper treatment and care for their condition.”

The first RDAC was started in North Carolina in 2015 and have since been formed in multiple other states, now including Mississippi. Other states with RDACs include Nevada, Utah, Colorado, Florida, Virginia, and Maine. You can find a full list of which states have RDACs here.

Multiple stakeholders will join the RDAC. These will include patients and care partners, researchers, industry partners, and physicians. Together, the RDAC will work to help Mississippi focus its legislative priorities in regard to rare diseases, as well as to put into place programs and resources to support those who have a rare disease within the state. Over its first year after establishment, Mississippi’s RDAC has a goal of studying the existing unmet needs of rare disease patients and families within the state. Ultimately, by identifying these unmet needs and potential areas of research, the RDAC can better understand which areas to focus on moving forward.