Voices of the Next Generation: #BeyondHAE

Voices of the Next Generation: #BeyondHAE

From #BeyondHAE Youth Produced Podcast by US Hereditary Angioedema Association

May 6, 2026 · 11 min · Season 6 · Episode 3

About this episode

The episode features Ivy, Sadie, and Kayla sharing their experiences with hereditary angioedema and the importance of community and advocacy.

In this episode, we meet Ivy, Sadie, and Kayla, three new members of the HAEA Youth Leadership Council, as they share their personal journeys living with hereditary angioedema (HAE). They open up about their paths to diagnosis, how they manage their condition day to day, and the challenges they’ve faced along the way. A central theme of the conversation is the power of connection, how meeting others who understand their experiences has been both comforting and empowering. The episode also highlights their participation in the 2026 Youth Leadership Training in Washington, DC, where they began building advocacy and leadership skills. Together, their stories reflect resilience, growth, and the importance of community in navigating life with HAE. 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.

People in this episode

Guests: Ivy, Sadie, Kayla

Topics covered

Keywords

Mentioned in this episode

Organizations: Hereditary Angioedema Association

Places: Washington, DC

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