#BeyondHAE Youth Produced Podcast

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https://www.haea.org/
40 partages
https://www.biocryst.com/
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https://www.takeda.com/en-us/
24 partages

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#BeyondHAE Podcast: A Family’s Journey with HAE

Saison 5 · Épisode 10

lundi 30 juin 2025 • Durée 09:53

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.

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

Saison 5 · Épisode 9

jeudi 1 mai 2025 • Durée 21:49

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.

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#BeyondHAE Podcast: A Day in the Life - Jasmeen's Journey of Resilience

Saison 4 · Épisode 7

lundi 4 novembre 2024 • Durée 18:23

In this episode of the #BeyondHAE podcast, HAEA Youth Leadership Council member Carlie chats with Youth Advocate Jasmeen about her personal journey with HAE. Diagnosed as a teenager, Jasmeen shares how she has learned to manage her condition while balancing the demands of school, work, and everyday life. Tune in to hear an inspiring conversation about resilience, growth, and 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.

Thank you to our sponsors CSL Behring and ⁠Takeda⁠⁠⁠.

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#BeyondHAE BONUS Episode: Empowering Youth Voices: Ally & Luke's Journey in Legislative Advocacy

Saison 4 · Épisode 1

mardi 1 octobre 2024 • Durée 17:50

In this special Youth Advocacy Month episode, join host Kobe as they sit down with HAEA Youth Advocacy Network Regional Leaders, Ally and Luke, to discuss their impactful experiences as young advocates during HAEA's Capitol Hill Day and advocacy training workshops. Ally and Luke share what it’s like to participate in legislative visits, why it’s crucial for young people to be involved in advocacy, and how their passion for legislative change drives their work in the HAE community. As seasoned advocates, they open up about their journey, the challenges they've faced, and the lasting impact they aim to make through their advocacy efforts. Tune in to be inspired by their dedication to making a difference and learn how you, too, can take action for the HAE community. This is a must-listen episode for young people ready to amplify their voices and lead the way in legislative advocacy!

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 CSL Behring and ⁠Takeda⁠⁠⁠.

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#BeyondHAE: A Day in the Life of Zach

Saison 4 · Épisode 5

vendredi 30 août 2024 • Durée 16:09

In this episode of the #BeyondHAE podcast, hosted by Youth Leadership Council Member Noah, Zach shares his journey with HAE, which began when he attended his first HAEA event at the young age of 9. Thirteen years later, Zach has built lifelong friendships and developed essential advocacy skills that have shaped who he is today. Known by many for his regular involvement in HAEA programs and events, Zach discusses living with HAE, the importance of taking his medication on time, and how he manages HAE in his daily life. Don’t miss this insightful installment of the #BeyondHAE Day in the Life Interview Series.

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 CSL Behring and ⁠Takeda⁠⁠⁠.

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#BeyondHAE Podcast: A Day in the Life of Sanyu

Saison 4 · Épisode 1

lundi 1 juillet 2024 • Durée 28:53

Check out the latest #BeyondHAE podcast episode hosted by Kobe, featuring special guest Sanyu! Diagnosed with HAE as a child, Sanyu shares the challenges she faced growing up with the condition, her experience participating in a clinical trial, and how she now manages her life as a young adult on preventative medication.

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 CSL Behring and ⁠Takeda⁠⁠⁠.

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#BeyondHAE Podcast: A Day in the Life of Caregiver Kailani

Saison 4 · Épisode 1

mercredi 1 mai 2024 • Durée 23:51

Join us in the latest episode of the #BeyondHAE podcast, where Noah, an HAEA Youth Leader, engages in a heartfelt conversation with Kailani, a dedicated caregiver to her mother living with Hereditary Angioedema (HAE). In this edition of the Day in the Life interview series, Kailani openly shares the unique challenges and victories experienced by young caregivers navigating the complexities of supporting their adult parents with HAE. Listen as Kailani reflects on the transformative effects of her mother's reliable therapy, discussing the shifts in her caregiving role. She sheds light on how discovering the supportive HAEA community has not only impacted her family's journey but also inspired her to actively engage in HAE advocacy and awareness. Tune in to hear Kailani's empowering story, unveiling the resilience and dedication that define her role as a young caregiver.

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 CSL Behring and ⁠Takeda⁠⁠⁠.

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#BeyondHAE Podcast: A Day in the Life of Caroline

Saison 4 · Épisode 2

lundi 4 mars 2024 • Durée 15:11

Dive into the latest episode of the #BeyondHAE podcast as we continue our Day in the Life interview series, featuring our special guest, 14-year-old Caroline. Diagnosed with HAE as a young child, Caroline shares her journey of managing HAE, discussing how she navigates attacks, administers medication, and handles situations as they arise, all while juggling middle school and pursuing her extracurricular passions. Join our host, HAEA Youth Leader Carlie, as she delves into Caroline's experiences growing up 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 ⁠CSL Behring⁠ and ⁠⁠Takeda⁠⁠⁠⁠.

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#BeyondHAE Podcast: A Day in the Life of Bryn

Saison 4 · Épisode 1

vendredi 29 décembre 2023 • Durée 27:12

We are thrilled to introduce a fresh new interview series on the #BeyondHAE podcast! Our "Day in the Life" episodes will delve into the experiences of young individuals with HAE, spanning from diagnosis to treatment management and their everyday routines. In this episode, we shine the spotlight on Bryn who was diagnosed at 16. HAEA Youth Leader Kobe takes the reins, guiding us through a Day in the Life of Bryn.

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 Takeda⁠⁠.

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Sponsored by BioCryst: HAE, the holidays and you. Navigating the holiday season with HAE

mardi 19 décembre 2023 • Durée 07:22

Senior Nurse Advocate with over 20 years of experience working with HAE patients will discuss tips and recommendations for successfully navigating the busy holiday season with HAE

For more information about Hereditary Angioedema please visit ⁠HAEA.org

⁠
This episode is brought to you by our sponsor: ⁠BioCryst Pharmaceuticals, Inc.

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#BeyondHAE Youth Produced Podcast – Détails, épisodes et analyse

Détails du podcast

Classements récents

Apple Podcasts

Liens partagés entre épisodes et podcasts

Qualité et score du flux RSS

Historique des publications

Derniers épisodes publiés

Podcasts Similaires Basées sur le Contenu

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Spotify

Podcasts Similaires Basées sur le Contenu

#BeyondHAE Youth Produced Podcast – Détails, épisodes et analyse

Détails du podcast

Classements récents

Apple Podcasts

Liens partagés entre épisodes et podcasts

Other11

Qualité et score du flux RSS

Historique des publications

Derniers épisodes publiés

Podcasts et contenus similaires

Podcasts Similaires Basées sur le Contenu

Apple Podcasts

Spotify

Podcasts Similaires Basées sur le Contenu

Other11