#BeyondHAE Youth Produced Podcast

Hosted by US Hereditary Angioedema Association

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May 2026

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About the show

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.

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60 recent

May 6, 2026Episode 310 min

Voices of the Next Generation: #BeyondHAE

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.

March 10, 2026Episode 224 min

#BeyondHAE Podcast: Advocating for Rare Disease 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.

January 2, 2026Episode 117 min

#BeyondHAE Podcast: Moments That Mattered: HAEA Youth on 2025 and Beyond

In this episode of the #BeyondHAE Podcast, host Kobe sits down with HAEA Youth Leadership Council members Sophia, Cassidy, and Zach for an engaging and inspiring conversation. Together, they reflect on memorable highlights from HAEA events and youth programs throughout 2025, sharing personal experiences and key moments that made the year meaningful. The group also looks ahead to the exciting opportunities, initiatives, and events coming in the new year, offering listeners a preview of what’s next for the HAEA youth 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.

November 3, 2025Episode 1213 min

#BeyondHAE: High-Fiving Palm Trees

In this episode of the #BeyondHAE podcast, host Zach shares his powerful journey growing up with Hereditary Angioedema (HAE). His story chronicles his experience dealing with an especially challenging attack after high-fiving a palm tree, learning self-infusions as a teen, and finally discovering a sense of freedom through modern treatments. Sponsored by KalVista Pharmaceuticals, this episode takes listeners inside Zach’s experience with the oral on-demand treatment EKTERLY®, which transformed the way he manages HAE. Through resilience, advocacy, and hope, Zach’s story offers inspiration to anyone navigating life with a rare disease.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 sponsor, ⁠⁠⁠⁠⁠⁠⁠KalVista.

August 25, 2025Episode 1113 min

#BeyondHAE Podcast: Advocating for Yourself As You Transition into College

In this inspiring episode of the #BeyondHAE Podcast, HAEA Youth member Ally takes the mic to share an exciting update on the newly revamped HAEA College Transition Guide, designed to support students with HAE who are moving away from home to attend college.Ally is joined by fellow HAEA Youth Leader Paige for an honest and insightful conversation about their own college journeys. Together, they discuss the unique challenges of living in the dorms with HAE, from managing symptoms to balancing academic and social life. They share practical strategies they’ve used to navigate campus living, advocate for their needs, and stay healthy while embracing independence.Whether you’re a high school senior preparing for the big move, a current college student, or a parent supporting your child’s transition, this episode offers valuable tips, relatable experiences, and reassurance that you’re not alone in this new chapter.Tune in for empowering advice and a fresh perspective on making the most of your college experience while 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.Thank you to our sponsors, ⁠⁠⁠⁠⁠⁠⁠KalVista⁠⁠⁠⁠⁠⁠⁠ and ⁠⁠⁠⁠Pharvaris⁠⁠⁠⁠.

June 30, 2025Episode 109 min

#BeyondHAE Podcast: A Family’s Journey with HAE

In this episode of the #BeyondHAE podcast, host Ohm shares a deeply personal perspective on growing up with hereditary angioedema (HAE), first as a witness to his mother’s unexplained medical struggles, and later as someone diagnosed himself. Ohm reflects on how HAE has shaped his childhood, family dynamics, and understanding of what it means to live with a rare and unpredictable condition. From missed birthdays to emergency hospital visits, Ohm opens up about the emotional weight of watching a loved one suffer, the power of preparation, and how his family turned chaos into control. He also discusses the importance of community, advocacy, and hope for future treatments like gene therapy. Whether you’re navigating a new diagnosis or have been living with HAE for years, this episode is a powerful reminder that while HAE brings uncertainty, no one has to face it alone.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.

May 1, 2025Episode 921 min

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

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.

March 4, 2025Episode 815 min

#BeyondHAE Podcast: A Letter to my 10 year old Self

As we step into March, we’re excited to bring you a brand-new episode of the #BeyondHAE youth-produced podcast! This episode is hosted by 18-year-old Luke, who was diagnosed with HAE at the age of 9, alongside his mom, Mandy, who has been a vital part of his journey.In this special "Letter to My 10-Year-Old Self" episode, Luke reflects on his diagnosis, the challenges he faced, and how his life has evolved since then. He shares the wisdom he has gained along the way and the lessons he wishes he could have told his younger self.Join us as Luke and Mandy take you on a heartfelt journey, looking back at how their experiences with HAE have shaped them over time and offering advice for those who are newly diagnosed. Don’t miss this inspiring conversation!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.

February 28, 2025Episode 78 min

#BeyondHAE: Meet 2024 Social Media Interns - Jason and Tyler

In this episode of the #BeyondHAE youth-produced podcast, we highlight two incredible young HAE caregivers, Tyler and Jason, who have been longtime members of the HAE community. As dedicated advocates for their loved ones, they joined the HAEA social media internship in 2024 to raise awareness about HAE and amplify the voices of those affected. Tyler and Jason share their experiences as caregivers, the challenges they’ve navigated, and their passion for making a difference. Tune in for an inspiring conversation about advocacy, resilience, and the impact of supporting a loved one 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.Thank you to our sponsors, ⁠⁠⁠⁠⁠⁠KalVista⁠⁠⁠⁠⁠⁠ and ⁠⁠⁠Pharvaris⁠⁠⁠.

February 14, 2025Episode 69 min

#BeyondHAE: Meet the Newest Members of the HAEA's Youth Leadership Council Kaylee and Kiarra

In this episode of the #BeyondHAE youth-produced podcast, we connect with Kaylee and Kiara, two passionate advocates whose lives have been shaped by hereditary angioedema (HAE). Both Kaylee and Kiara have been living with HAE and understand the challenges of managing a rare disease. Now, as new members of the HAEA Youth Leadership Council, they are eager to use their voices to empower and support other young people in the HAE community. Tune in for an inspiring conversation about resilience, leadership, and the importance of sharing your story to create meaningful connections.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.