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.
#BeyondHAE: ReyJeanne's Story Living Beyond Her Disgnosis
In this episode of the BeyondHAE podcast, host Kobe sits down with ReyJeanne to catch up on life. Diagnosed with hereditary angioedema (HAE) at age 10, ReyJeanne shares how she learned to manage her condition while pursuing her goals, from studying theater to building a career in communications, community engagement, and creative media.
ReyJeanne reflects on the life-changing support she received from the HAEA, including the Pam King Scholarship, emergency resources, access to specialists, and a strong community. She opens up about overcoming the fear of being a burden and encourages young people not to let HAE define them, reminding listeners that there is “no courage without fear” and that their dreams remain possible with proper care and support.
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.
28 Aug 2026
#BeyondHAE Voice of the Next Generation: Noah and Kate
In this episode of the BeyondHAE Podcast, Noah is joined by his girlfriend, Kate, for an honest conversation about what it's like to navigate life with HAE together. Noah shares how becoming involved with the HAEA Youth Leadership Council helped him find confidence, purpose, and a passion for advocacy, while Kate offers her perspective on supporting a loved one with HAE and the importance of learning alongside him. Together, they talk about the value of finding a community that understands the challenges of living with a rare disease and how those connections have shaped their journey.
Noah and Kate also discuss why advocacy matters, from sharing personal stories to speaking up for better access to care. They reflect on how the HAEA has helped them grow over the years and emphasize that learning about HAE is an ongoing journey—for patients and the people who support them. Their hope is to encourage others to get involved, find their voice, and discover the strength that comes from being part of 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.
25 Jun 2026
#BeyondHAE: Voices of the Next Generation Nick and Dylan
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, and the importance of building confidence, resilience, and self-advocacy skills.
Nick and Dylan hope their stories will inspire other young people living with HAE to take an active role in managing their health, pursue their passions, and never let HAE define their potential. Their message is simple: with the right support, knowledge, and determination, HAE does not have to stand in the way of living life to the fullest.
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 (haea.org).
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
Apple Podcasts (US)
5.0 / 5
10 ratings
Spotify
5.0 / 5
2 ratings
Podcast Authority Score: 42 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
Quality
52
Social presence
0
YouTube
0
Engagement
82
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