Project RDAC – Events
Rare Disease Advisory Council Upcoming Coalition Meetings
The National Organization for Rare Disorders is working with rare advocates throughout the country to build diverse coalitions to help implement Rare Disease Advisory Councils (RDAC) in their state. The goal of an RDAC is to give the rare disease community a stronger voice within their state government, to promote awareness about rare diseases, and to make recommendations to elected officials and other state leaders on what policies would best support them. Fifteen states have created rare disease advisory councils and at least another 12 states are actively pursuing legislation to enact an RDAC. The first step in developing an RDAC is to bring together rare disease advocates to discuss unique challenges that their rare disease community faces in their state. The coalition meetings are a platform that allows advocates to provide valuable input to guide ongoing efforts to introduce and pass RDAC legislation across the country. Please use the registration links below to join an upcoming event in your state.
Please check back regularly as more states are added. Questions? Email [email protected].