About this episode

This episode discusses advocacy for rare diseases, specifically focusing on efforts on Capitol Hill.

In this special youth-produced episode of the #BeyondHAE Podcast, we hear directly from young leaders in the HAE community who took part in the 2026 EveryLife Foundation’s Rare Disease Week on Capitol Hill. Listen as these young advocates reflect on their experience participating in advocacy training, attending legislative meetings, and using their voices to help shape policies that impact the rare disease community and people living 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.

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