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Get Ready for Virtual Youth & Teen Advocacy Day

Sessions in June will prepare young rare disease advocates to speak with members of the U.S. Congress.

Rare Disease Legislative Advocates Youth & Teen Advocacy Day

The halls of the U.S. Congress aren’t reserved only for adults. Next month, the Rare Disease Legislative Advocates (RDLA) will be giving kids and teens a crash course in how to connect with federal legislators about the issues affecting rare disease patients.

The goal is to prepare young advocates to have meaningful dialogues with members of the U.S. Senate and House of Representatives – the legislative bodies that can change existing laws or pass new ones that impact issues like rare disease research and health insurance coverage. Virtual workshops will be held in June to prepare young advocates for live virtual meetings with members of Congress on June 22.

Register for Virtual Youth and Teen Advocacy Day.

It’s an opportunity to share the unique experience of being a young adult with a rare disorder, says Sophie Melancon, a 16-year-old with Takayasu’s arteritis - a rare inflammatory disease. Participants will learn how Congress creates laws, how to communicate with senators and representatives, as well as how to interpret policies affecting rare patients.

“I feel that youth advocacy is important for this very reason because it gives voices to us, the younger generation, in helping people like doctors, companies and lawmakers better understand how to help us,” Melancon said in a video for Everylife Foundation. The nonpartisan nonprofit organization aims to empower patients of all ages to advocate for impactful legislation.

Registration closes May 31. Here’s the schedule of sessions:

Sunday, June 4: Virtual meet and greet

Thursday, June 8: General training webinar

Thursday, June 15: Share your story with policy makers webinar

Thursday, June 22: Meetings with Congress – Virtual Youth and Teen Advocacy Day

Friday, June 23: Virtual celebration meet-up