published August 1, 2021
Rare Disease Advisory Councils (RDACs) give the rare disease community a voice because these councils are sanctioned by individual states. The first RDAC was created in North Carolina in 2015 and was made up of patients, caregivers, families and providers. Since then, RDACS have been sanctioned in other states. RDACs can help states address barriers that prevent individuals living with rare diseases from obtaining proper treatment and care. The National Organization for Rare Diseases (NORD) advocates for a well-functioning RDAC in every state.
Why RDACs are important
Experts have identified more than 7,000 rare diseases. It is impossible for state policymakers and government officials to fully understand all of the needs of the rare disease community. RDACs help states understand and address the obstacles that rare disease patients face – delays in diagnosis, misdiagnosis, lack of treatment options, high out-of-pocket costs, and limited access to medical specialists. RDACs give the rare disease community a voice about laws and regulations that may impact rare disease stakeholders. Through RDACs, government officials and the rare disease community can work together to prevent and address barriers.
You can see if your state has an RDAC here: https://rarediseases.org/policy-issues/rare-disease-advisory-councils/
Peter Saltonstall, NORD’s CEO, provides some advice about how to start an RDAC in your state if one does not exist:https://www.youtube.com/watch?v=eBZ09avVq1Q
Rare Disease Legislative Advocates explain the difference between an RDAC and a Rare Disease State Legislative Caucus here: https://rareadvocates.org/wp-content/uploads/2020/09/RDLA-Tip-Sheet-Caucus-and-Councils.pdf
Global Genes has a nice video from a prior conference about RDACs: https://www.youtube.com/watch?v=ycD1Zxq6OjE