44 episodes

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 Youth Produced Podcast US Hereditary Angioedema Association

    • Business
    • 5.0 • 10 Ratings

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: Commemorating HAE Youth Advocacy Month with a talk about advocacy and awareness

    #BeyondHAE: Commemorating HAE Youth Advocacy Month with a talk about advocacy and awareness

    This month's episode is all about advocacy and awareness as we head into October and kick off HAE Youth Advocacy Month. We hear from three HAEA Social Media interns, Ally, Gabby, and Morgan who talk about how their desire to learn about advocacy and raise awareness about HAE resulted in building lifelong bonds with a community of people who understand their journey. The girls talk about the importance of advocacy and how it's impacted each of them personally.

    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 BioCryst and Takeda.

    • 13 min
    #BeyondHAE: Preparing for Back to School (Lisa & Hannah)

    #BeyondHAE: Preparing for Back to School (Lisa & Hannah)

    Back to school season is an important time for all kids, but for kids with Hereditary Angioedema, this time of the year also means educating new teachers about HAE, creating an emergency plan incase an attack happens at school, and managing stress that comes with a new schedule and new expectations. In this episode, we review the collection of useful resources available to help kids and families during this time and we hear from former student Hannah who talks about how she managed her HAE while in school. We have linked several of the resources discussed in the description of this episode. We hope you find them useful.

    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 BioCryst and Takeda.

    • 9 min
    #BeyondHAE: I Use Social Media to Advocate for HAE (Maddie)

    #BeyondHAE: I Use Social Media to Advocate for HAE (Maddie)

    This month's episode is hosted by Maddie who talks about how she uses social media to raise awareness and advocate for HAE. She also provides some tricks and tips for others looking to advocate on social media.

    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 BioCryst and Takeda.

    • 3 min
    #BeyondHAE: HAEA Round Table: Anxiety, Stress, and Growth with HAE

    #BeyondHAE: HAEA Round Table: Anxiety, Stress, and Growth with HAE

    This month's episode of the #BeyondHAE podcast features two young people with HAE between the ages of 12 and 15 who talk about anxiety, stress, and growth with HAE. This Round Table featured topics like how to talk about your HAE with others, how it feels to have an HAE diagnosis, how to tell when an attack is coming on, and how to manage fear of needles. Our two participants, Lexi and Layna, also talk about advice they would give to other kids who were recently diagnosed with HAE. Listen now to hear insight from kids 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 BioCryst and Takeda.

    • 25 min
    #BeyondHAE: Managing my HAE in Middle School (Paige)

    #BeyondHAE: Managing my HAE in Middle School (Paige)

    Episode 39 welcomes youth host Paige, who talks about how she copes with her attacks and her experience with attacks while in middle school. She talks about how she has overcome embarrassment and interviews a couple friends who talk about how they support Paige when she swells. Paige wraps up her episode with some advice to others who are not comfortable sharing their HAE diagnosis with others.

    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 BioCryst and Takeda.

    • 5 min
    #BeyondHAE: HAEA Round Table: How Does It Feel to Be a Kid with HAE?

    #BeyondHAE: HAEA Round Table: How Does It Feel to Be a Kid with HAE?

    This month's episode of the #BeyondHAE podcast features four young people with HAE between the ages of 7 and 11 who talk about what it's like to have HAE. These young individuals discussed relevant topics such as what it’s like for them to grow up with HAE, the fear of needles, discussing their HAE diagnosis with teachers and friends, and more!

    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 BioCryst and Takeda.

    • 20 min

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