Every summer, the RARE Young Adults (formerly YARR) Summer Series covers a range of policy, advocacy, and leadership skill-building topics by and for young adults. Throughout June, July, and August, RARE Young Adults members will collaborate to research key issues in the rare disease community and to present helpful information to other advocates. Participants will gain knowledge, confidence, and experience vital to pursuing a career in advocacy.
Interested in getting involved in a future RARE Young Adults Summer Series? Email us at info@rareadvocates.org.
A Look Back a the 2025 Series
Jake Juip and Sophie Melancon discuss PRV
RARE Young Adults members Jake Juip and Sophie Melancon discuss the history of the Rare Pediatric Disease Priority Review Voucher Program and the Give Kids a Chance Act of 2025.
Jonathan Cappiello and Lauren Schoeller encourage advocates to share their stories
In the second installment of the 2025 RARE Young Adults Summer Series, Jonathan Cappiello and Lauren Schoeller share their advice for advocates looking to share their story as a podcast guest.
Jonathan Cappiello and Lauren Schoeller share podcasting tips
In their second video of the 2025 RARE Young Adults Summer Series, Jonathan Cappiello and Lauren Schoeller reflect on their experiences launching their podcasts and share tips for advocates who are interested in launching their own podcast.
Carol Shea Linton talks about Medicaid and the impact of HR 1
Kicking off the third and final topic of the 2025 RARE Young Adults Summer Series, Carol Shea Linton provides a brief history of Medicaid, its importance to the rare disease community, and the impact of HR 1.
Caroline King discusses Beneficiary Advisory Councils
To wrap up the 2025 RARE Young Adults Summer Series, Caroline King discusses how advocates can get involved with Beneficiary Advisory Councils to help voice needs and opinions of rare disease patients.
