#BeyondHAE Youth Produced Podcast

In this episode of the BeyondHAE Podcast, meet Nick and Dylan, two new members of the HAEA Youth Leadership Council, as they share their personal journeys to diagnosis, experiences managing HAE symptoms, and what it means to become part of a community of people who truly understand life with HAE. Together, they discuss balancing HAE with active lifestyles, including their involvement in sports, an...

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 othe...

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 rar...

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 oppor...

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 take...

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 di...

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 m...

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...

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...

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...

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...

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...

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 challe...

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 importanc...

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 relea...

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,...

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 H...

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,...

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,...

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 He...

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 supp...

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 extracurr...

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...

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.

This month's #BeyondHAE Digging Deeper Interview Series features HAEA Youth Leadership Council Member Sophia who interviews Kia who is both diagnosed with HAE but who is also a caregiver to her son Noah. This episode focuses on Kia's expereinces as a parent caring for her son Noah. This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association,...