Establishing Rare Disease Advisory Councils

A Rare Disease Advisory Council, or RDAC, gives individuals with rare diseases, such as primary immunodeficiency (PI), a voice in state government by advising policymakers on critical issues related to healthcare access, insurance coverage, and the diseases themselves. RDACs look different in every state, but have similar goals and diverse memberships, which can include:

• Rare disease patients and caregivers.
• State health department officials.
• Healthcare providers.
• Healthcare industry representatives.

The first RDAC was established in North Carolina in 2015, and the movement to establish RDACs in every state has gained significant momentum since then.

Why establish an RDAC? 

In the U.S., approximately 10% of the population has a rare disease, or one of 7,000 diseases that affects less than 200,000 people. This number includes the 450+ primary immunodeficiencies known to date. 

Even though a significant portion of the population has a rare disease, state policymakers typically lack in-depth knowledge about the rare disease community as a whole and the issues relevant to this community. This incomplete understanding contributes to common obstacles that rare disease patients face, such as delays in diagnosis, misdiagnosis, lack of treatment options, high out-of-pocket costs, and limited access to medical specialists.

To help bridge policymakers’ gaps in knowledge, an RDAC serves as an advising body and liaison between the rare disease community and state government. The council helps inform, evaluate, and offer recommendations on policies and issues relevant to the rare disease community. By including individuals who are experts on various rare diseases, RDACs are valuable assets for improving the overall quality of life for those living with rare conditions. 

As of July 2022, there are 24 states with established RDACs and eight states with legislation pending that would create such a council. In the last several years, IDF has actively supported RDAC legislation in Massachusetts, Michigan, New Jersey, Ohio, Tennessee, and South Carolina through state advocacy workshops, meetings with state legislators, testimony at legislative hearings, and letters of support for RDAC legislation.

Becoming a Rare Disease Advisory Council member

Jessica Goddard and Rachel Goddard from South Carolina, and Marian Furst from Utah discuss their work with Rare Disease Advisory Councils (RDACs).