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BeyondHAE Youth Produced PodcastAuthor: US Hereditary Angioedema Association
The #BeyondHAE Podcast is a series dedicated to amplifying the voices of young people affected by Hereditary Angioedema and raising awareness about the disease. Hear from a different host each episode as they share stories of perseverance, activism, and support. We hope that you find strength in listening to stories from HAEA community members. Everyone has a story and this podcast series is just that, an opportunity for young people affected by HAE to share their unique stories with you! Visit www.haea.org for Hereditary Angioedema support, information and resources. Language: en Genres: Business, Non-Profit Contact email: Get it Feed URL: Get it iTunes ID: Get it |
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#BeyondHAE Podcast: Young Advocates on Capitol Hill Fighting for Rare Disease Policy
Episode 9
Thursday, 1 May, 2025
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.
