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.
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.
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.
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.
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.
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.
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.
In this episode of the #BeyondHAE youth-produced podcast, we connect with Ella and Kati, two passionate advocates whose lives have been shaped by hereditary angioedema (HAE). Ella, a devoted caregiver to her mother, shares her perspective on supporting a loved one with HAE and the impact it has had on her journey. Kati, who has been living with HAE since childhood, reflects on her experiences, the obstacles she has faced, and the strength she has found within the HAEA community. As new members of the HAEA Youth Leadership Council, both Ella and Kati are committed to raising awareness and supporting others in the HAE community. Tune in for an inspiring conversation about caregiving, resilience, and the power of connection.
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.
In this episode of the #BeyondHAE youth produced podcast, we connect with Skylar and Cassidy, two remarkable individuals whose lives have been shaped by hereditary angioedema (HAE) in different ways. Skylar, a dedicated caregiver to her mother and sister, shares her experiences of supporting her family members with HAE. Cassidy, diagnosed with HAE two years ago, reflects on her journey, the challenges she has overcome, and the support she has found within the HAEA community. Together, they offer powerful insights into resilience, caregiving, and the strength of the HAE community. Tune in for an inspiring conversation about perseverance, connection, and hope.
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.
In this episode, we sit down with Kailani, a dedicated caregiver to her mother living with hereditary angioedema (HAE). Kailani shares her unique perspective on balancing caregiving responsibilities with her personal goals and how her experiences have shaped her outlook on life. As an HAEA social media intern in 2024, Kailani also discusses her involvement with the HAEA community and the importance of raising awareness about HAE. Tune in to hear her inspiring story of compassion, resilience, and the power of connection within the HAE 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.
The #BeyondHAE youth-produced podcast kicks off January 2025 with an exciting series of episodes spotlighting the newest members of the Youth Leadership Council who joined in 2024. Meet Caroline, who was diagnosed with HAE as a young child, and Avery, a dedicated caregiver for her brother. Both joined the YLC in 2024 and are excited to serve as leaders in the HAE community. With new episodes releasing weekly throughout January and February, listeners will get to know these inspiring young leaders and discover what fuels their passion for HAE 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 sponsor, KalVista.
The #BeyondHAE youth-produced podcast kicks off January 2025 with an exciting series of episodes spotlighting the newest members of the Youth Leadership Council who joined in 2024. This episode features Sully, a dedicated caregiver to his mother who has HAE, as he shares his unique perspective and experiences in the HAE community. With new episodes releasing weekly throughout January and February, listeners will get to know these inspiring young leaders and discover what drives their passion for HAE 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 sponsor, KalVista.
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.
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.
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.
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.
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.
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.
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.
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.