#BeyondHAE Podcast: Young Advocates on Capitol Hill Fighting for Rare Disease Policy

#BeyondHAE Podcast: Young Advocates on Capitol Hill Fighting for Rare Disease Policy

From #BeyondHAE Youth Produced Podcast by US Hereditary Angioedema Association

May 1, 2025 · 22 min · Season 5 · Episode 9

About this episode

Young advocates share their experiences advocating for rare disease policies on Capitol Hill.

In this special episode of the #BeyondHAE podcast, we hear from three passionate young advocates, Zach, Angel, and Arabel who took their voices to Capitol Hill during the EveryLife Foundation’s Rare Disease Week events. Representing the HAEA community, they met with legislators to push for policies that improve the lives of people with rare diseases and their families. Tune in as they share their experiences from the event, discuss the importance of Rare Disease Day, and break down the key issues they advocated for. They’ll also explore ways that you, no matter where you are, can get involved in rare disease advocacy from home. Join us for an inspiring conversation about the power of young advocates, the policies that matter, and the impact they hope to make for the HAE and rare disease community! This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs of the HAE patient and caregiver community. To learn more about the HAEA and access our incredible support network, visit, ⁠⁠⁠www.haea.org⁠⁠⁠. Thank you to our sponsors, ⁠⁠⁠⁠⁠⁠⁠ KalVista⁠⁠⁠⁠⁠⁠⁠ and ⁠⁠⁠⁠ Pharvaris⁠⁠⁠⁠ .

People in this episode

Guests: Zach, Angel, Arabel

Topics covered

Keywords

Sponsors

KalVista, Pharvaris

Mentioned in this episode

Organizations: EveryLife Foundation, Hereditary Angioedema Association

More episodes of #BeyondHAE Youth Produced Podcast

Explore listener stats, chart rankings, contacts and more on the #BeyondHAE Youth Produced Podcast podcast page.