The RARE Young Adults Summer Series is a webinar and educational program that allows young adults to collaborate to research key issues in the rare disease community and present information to other advocates.
2023 Summer Series Presentations
State Advocacy 101
Anneliese Williams and Amelia Williams define differences between federal and state governments
In this first video, RARE Young Adults members Anneliese Williams and Amelia Williams define the differences between federal and state governments and how each level impacts the rare disease community.
Anneliese Williams and Amelia Williams discuss advocating in your state
In their second video, RARE Young Adults members Anneliese Williams and Amelia Williams discuss how you can start advocating in your state.
Rare Disease Advisory Councils (RDACs)
Matthew Pearl talks about his experience with RDACs
For the second installation of the 2023 RARE Young Adults Summer Series, member Matthew Pearl gives an introduction to Rare Disease Advisory Councils, or RDACs, based on his experiences in Utah. Graphic design by RARE Young Adults member Perri Wein.
Anneliese Williams and Amelia Williams share how they started an RDAC
In their final video, RARE Young Adults members Anneliese Williams and Amelia Williams share how they started Indiana’s Rare Disease Advisory Council as an example for other advocates.
Medical Nutrition
Kathryn Cowie and Kelly Baker discuss medical nutrition
Kicking off the third and final topic of the 2023 RARE Young Adults Summer Series, members Kathryn Cowie and Kelly Baker give an introduction to medical nutrition.
Meghan Bayer, Kathryn Cowie, and Kelly Baker compare medical nutrition coverage
In the final video of the 2023 RARE Young Adults Summer Series, members Meghan Bayer, Kathryn Cowie, and Kelly Baker compare five states’ medical nutrition coverage, including effective policies and limitations.
