#BeyondHAE Youth Produced Podcast

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The BeyondHAE Podcast is a series dedicated to serving young people affected by Hereditary Angioedema. 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 ha…

US Hereditary Angioedema Ass.


    • May 1, 2025 LATEST EPISODE
    • every other week NEW EPISODES
    • 12m AVG DURATION
    • 69 EPISODES


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    Latest episodes from #BeyondHAE Youth Produced Podcast

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

    Play Episode Listen Later May 1, 2025 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.

    #BeyondHAE Podcast: A Letter to my 10 year old Self

    Play Episode Listen Later Mar 4, 2025 15:36


    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.

    #BeyondHAE: Meet 2024 Social Media Interns - Jason and Tyler

    Play Episode Listen Later Feb 28, 2025 8:59


    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.

    #BeyondHAE: Meet the Newest Members of the HAEA's Youth Leadership Council Kaylee and Kiarra

    Play Episode Listen Later Feb 14, 2025 9:50


    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.

    newest hae kiarra youth leadership council
    #BeyondHAE: Meet HAEA Youth Leadership Council Members - Kati and Ella

    Play Episode Listen Later Feb 3, 2025 10:59


    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.

    council members hae youth leadership council
    #BeyondHAE Podcast: Meet the Newest Members of the HAEA's Youth Leadership Council

    Play Episode Listen Later Jan 31, 2025 9:58


    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.

    newest hae youth leadership council
    #BeyondHAE: Meet 2024 Social Media Intern - Kailani

    Play Episode Listen Later Jan 17, 2025 10:00


    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 sponsor, ⁠⁠KalVista⁠⁠.

    #BeyondHAE: Meet Youth Leadership Council Members - Caroline and Avery

    Play Episode Listen Later Jan 10, 2025 9:05


    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.

    council members hae ylc youth leadership council
    #BeyondHAE Podcast: Meet the HAEA's Youth Leadership Council's Newest Members

    Play Episode Listen Later Dec 30, 2024 10:41


    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.

    newest sully hae youth leadership council
    #BeyondHAE Podcast: A Day in the Life - Jasmeen's Journey of Resilience

    Play Episode Listen Later Nov 4, 2024 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.

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

    Play Episode Listen Later Oct 1, 2024 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.

    #BeyondHAE: A Day in the Life of Zach

    Play Episode Listen Later Aug 30, 2024 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.

    #BeyondHAE Podcast: A Day in the Life of Sanyu

    Play Episode Listen Later Jul 1, 2024 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.

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

    Play Episode Listen Later May 1, 2024 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 sponsor ⁠Takeda⁠⁠⁠.

    #BeyondHAE Podcast: A Day in the Life of Caroline

    Play Episode Listen Later Mar 4, 2024 15:12


    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 sponsor ⁠Takeda⁠⁠⁠.

    #BeyondHAE Podcast: A Day in the Life of Bryn

    Play Episode Listen Later Dec 29, 2023 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.

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

    Play Episode Listen Later Dec 19, 2023 7:22


    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.

    #BeyondHAE Digging Deeper Interview Series: The Parent Perspective (Nikia)

    Play Episode Listen Later Nov 1, 2023 25:23


    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, 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.

    #BeyondHAE Digging Deeper Interview Series: Overcoming Barriers to Pursue A Passion for Filmmaking (Natalie)

    Play Episode Listen Later Aug 30, 2023 38:21


    This month's BeyondHAE Digging Deeper Interview Series features HAEA Youth Leadership Council member Noah who interviews Natalie, a award winning filmmaker who has HAE. In this episode, Natalie talks about what it was like for her growing up with HAE, and how she pushed beyond her diagnosis to achieve her goal of becoming a filmmaker and starting a family. This is Natalie's story. 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.

    #BeyondHAE Digging Deeper Interview Series: Studying Aborad with HAE (Nathan)

    Play Episode Listen Later Jul 1, 2023 18:21


    The #BeyondHAE Digging Deeper Interview series continues this month with our guest, Nathan who chats with HAEA Youth Leadership Council Member Noah about what it's been like for him growing up with HAE. Nathan joined us from his study abroad program in Switzerland where he is attending college. Nathan discusses what it's been like studying abroad with HAE and what he did to prepare for his time away from home. If you're thinking about traveling internationally or applying for a study abroad program, you won't want to miss this episode! This is Nathan's story. 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.

    #BeyondHAE Digging Deeper Interview Series: My caregiver journey (Eliana)

    Play Episode Listen Later May 1, 2023 25:14


    The #BeyondHAE Digging Deeper Interview series continues this month with our guest, HAEA Youth Caregiver Eliana who has grown up supporting her older sister who has an HAE diagnosis. Eliana talked with Youth Leadership Council member Kobe about the personal challenges that she encountered as her older sister was searching for a diagnosis. It's not easy watching your sibling suffer through mis-understood symptoms but Eliana found a way to comfort her sister during those difficult times. Today, they are closer than ever and Eliana has joined her sister in advocating for a better future for people with HAE. This is Eliana's story. 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.

    caregivers digging deeper takeda hae deeper series youth leadership council
    #BeyondHAE Digging Deeper Interview Series: I am a young adult with HAE (Mariel)

    Play Episode Listen Later Feb 27, 2023 26:22


    Continuing with the #BeyondHAE Digging Deeper Interview Series, this month's episode is hosted by Youth Leadership Council member, Kobe who interviews Mariel, a young woman with HAE who talks about growing up with unexplained symptoms and her journey to finally getting a diagnosis in her 20s. She talks about how she has adjusted her outlook on life to find the positive in being part of the rare disease community. This episode is now available to watch in video format on Spotify. 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.

    spotify young adults digging deeper takeda hae deeper series youth leadership council
    #BeyondHAE Digging Deeper Interview Series: My brother has HAE (Avery)

    Play Episode Listen Later Dec 30, 2022 14:20


    We kick off the year with a new series of the #BeyondHAE podcast called "Digging Deeper". Each episode in the series will feature an interview from either someone diagnosed with HAE or someone whose loved one is diagnosed as we dig deeper into their experiences with HAE. This episode is hosted by HAEA Youth Leadership Council member Sophia who interviews 10 year old Avery. Avery is a caregiver to her older brother Jack who has HAE. Avery talks about what it's been like for her to support her brother on his HAE journey, and highlights how she has gotten involved to help raise HAE awareness in her own way. This episode is now available to watch in video format on Spotify. 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.

    #BeyondHAE: HAEA Round Table: Young Adults (Kayla, Jack, and Morgan)

    Play Episode Listen Later Dec 2, 2022 39:15


    As we wrap up the year, we are thrilled to welcome three young adults with HAE to share their experiences living with a rare chronic condition. This episode was recorded as part of the HAEA Round Tables and covers topics ranging from overcoming challenges at school, coping with HAE through puberty, dating and relationships, and more. Listen now to hear directly from young adults who share stories about their personal triumphs and challenges as they navigate 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 BioCryst and Takeda.

    #BeyondHAE: My HAE Diagnosis and Management Journey (Ally)

    Play Episode Listen Later Oct 31, 2022 7:57


    Ally is our host for this month's episode of the #BeyondHAE Podcast series. Ally goes into detail as she talks about the ups and downs of her personal HAE journey and how she navigated through school while managing her condition. She talks about how getting involved in the HAEA youth community and advocating for the condition has impacted her life and helped her to feel more comfortable with her diagnosis. 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.

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

    Play Episode Listen Later Sep 28, 2022 13:52


    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.

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

    Play Episode Listen Later Aug 31, 2022 9:48


    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.

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

    Play Episode Listen Later Aug 1, 2022 3:58


    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.

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

    Play Episode Listen Later Jul 1, 2022 25:11


    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.

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

    Play Episode Listen Later May 31, 2022 5:45


    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.

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

    Play Episode Listen Later May 2, 2022 20:12


    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.

    #BeyondHAE: An Interview with Lisa Facciolla (Sydney & Lisa)

    Play Episode Listen Later Mar 28, 2022 8:14


    This month's episode of the #BeyondHAE Youth Podcast features HAEA Youth Advocate Sydney, who interviews HAEA Engagement Specialist, Lisa Facciolla who talks about her life with HAE, challenges that she overcame, and how she found independence through self-administration. 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.

    BeyondHAE: Learning to feel comfortable with my condition (Zanya)

    Play Episode Listen Later Feb 28, 2022 9:04


    Episode 36 is hosted by Zanya who talks about her diagnosis journey and some of the challenges she encountered along the way. She talks about how getting involved in HAE advocacy and awareness has helped her come out of her skin and feel more comfortable sharing her diagnosis with people in her life. 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.

    #BeyondHAE: HAE and Dating (Kelsey and Matt)

    Play Episode Listen Later Jan 31, 2022 8:49


    In this episode of the #BeyondHAE podcast, Kelsie talks about how she approached introducing her diagnosis to her partner Matt who joins in as a guest host. She talks about the ways that he supports her in her diagnosis and he talks about what it means to him to support his partner. 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.

    #BeyondHAE: The first in my family with HAE (Kira)

    Play Episode Listen Later Jan 3, 2022 6:58


    In this month's episode of the #BeyondHAE podcast, Kira talks about diagnosis journey as the first person in her family to be diagnosed with HAE. She talks about growing up with the condition and eventually the hurdles that she overcame to move away from home to attend college. 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.

    #BeyondHAE: Finding Comfort in Community (Jess and Hannah)

    Play Episode Listen Later Nov 30, 2021 19:15


    In this month's episode of the #BeyondHAE Youth Podcast, we invite you to listen to Jess and Hannah's story. They describe how meeting someone else their age with HAE changed their outlook on life and helped them to feel validated in their struggles with the rare chronic illness. 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.

    #BeyondHAE: How Advocacy and Awareness Has Impacted My Life (Emma)

    Play Episode Listen Later Oct 29, 2021 4:47


    In episode 33, Emma shares her personal HAE journey and talks about how getting involved in the HAEA community has helped her better cope with her diagnosis. 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.

    #BeyondHAE: Moving Away for College (Kobe)

    Play Episode Listen Later Oct 4, 2021 8:37


    Moving away from home to go to college can be a big adjustment for everyone, however, it can be a particularly big move for someone with HAE. Tune in to this month's #BeyondHAE podcast to hear how Kobe adjusted to college life away from home. Part of his new responsibilities involved receiving, managing, and taking his medication while at college. This episode is one you won't want to miss if you're planning to move away from home or make a major life transition. 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.

    #BeyondHAE: Never Give Up (Karissa)

    Play Episode Listen Later Sep 1, 2021 8:43


    This month's episode of the #BeyondHAE podcast is hosted by Karissa who shares her personal HAE story of perseverance and hope. Karissa experienced years of mis-diagnosis and had moments when her hope for a better future was dissipating, but Karissa never gave up. She pushed forward, and today continues to reach her goals and pursue her dreams. 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.

    #BeyondHAE: Living #BeyondHAE with the HAEi Youngsters (Nanna, Erini, Isabel, and Nevena)

    Play Episode Listen Later Aug 4, 2021 19:49


    We are excited to welcome members from the HAE International Youngsters community as the hosts for this episode. Nanna, Erini, Isabel, and Nevena represent countries from all corners of the world as they talk about what it means to them to live #BeyondHAE. As you listen to this episode we ask that you reflect on your own story and what it means to you to live your life #BeyondHAE. 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.

    #BeyondHAE: How I Support Team Jack (Ally)

    Play Episode Listen Later Jun 30, 2021 3:39


    Episode 29 is hosted by Ally whose younger brother, Jack has HAE. In this episode, Ally talks about how her and her family support Jack and his HAE by coming together to host fun events and activities. 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.

    #BeyondHAE: We are Caregivers (Ava)

    Play Episode Listen Later Jun 1, 2021 6:16


    Episode 28 is hosted by Ava who welcomes her mom, Sherry to talk about what it's like to care for and support Ava's younger sister Lillian who has HAE. There have been some challenging times, but together they have been there to support Lillian through her diagnosis, treatments, and management of her 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.

    #BeyondHAE: Understanding Anxiety (Carlie)

    Play Episode Listen Later Apr 30, 2021 4:52


    Many people with HAE experience anxiety. Episode 26 is hosted by Carlie who talks about managing and understanding anxiety while living with HAE, as well as letting listeners know they aren't alone in their struggles. 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.

    #BeyondHAE: Chat with my Mom: Managing Life's Changes

    Play Episode Listen Later Apr 5, 2021 12:08


    Episode 26 is hosted by Sophie and her mom, Melanie. This episode is about learning to manage changes in life while managing HAE. Life changes are inevitable and learning effective coping strategies is important to ensuring that you are able to navigate those changes while still effectively managing your 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.

    #BeyondHAE: Modern HAE medication has allowed me To live #BeyondHAE

    Play Episode Listen Later Mar 2, 2021 7:34


    Episode 25 is hosted by Sophia who lives in Connecticut. Beyond her HAE, Sophia runs track and is passionate about improving her times and advancing in her sport. She talks about how modern HAE therapies and the successful management of her disease has resulted in her having the best year yet in track. Sophia is an incredible example of a young women who has not let her HAE hold her back from excelling in the sport she loves! 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

    #BeyondHAE: Interview With My College Roommate (ReyJeanne)

    Play Episode Listen Later Feb 1, 2021 12:08


    Episode 24 is hosted by ReyJeanne and her friends from college. They talk about supporting ReyJeanne through some of the challenges that she experienced in college. From learning how to give emergency medication, supporting you during stressful times, and knowing your emergency plan, friends can play a big part in supporting you on your HAE journey. Don't miss this amazing episode that provides a glimpse into what it's like to be in college while managing your 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 sponsor Biocryst.

    #BeyondHAE: 5 Years Can Make a BIG Difference (Luke)

    Play Episode Listen Later Dec 30, 2020 4:34


    Episode 23 is by Luke. This episode is all about Luke's HAE journey. From diagnosis, getting access to medication, insurance denials to getting involved in the HAEA youth programs and making life long friendships. Now Luke is participating in a clinical trial, paving the way for advances in medication options for other people with HAE. Luke's story is all about overcoming challenges to achieve his goal of living life #BeyondHAE.

    #BeyondHAE: My Emergency Room Experiences (Jack)

    Play Episode Listen Later Nov 30, 2020 3:41


    Episode 22 is hosted by Jack from New Jersey. Jack talks about his many trips to the ER and shares some stories about his experiences there. ER trips can be stressful and emotionally draining, but advocating for yourself and your needs is an important lesson that can reduce unnecessary procedures and wait times. 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.

    #BeyondHAE: HAE and Sports

    Play Episode Listen Later Oct 30, 2020 5:05


    Noah is an athlete and in this episode, he talks about what he does to make sure that HAE doesn't stop him from participating in the sports he loves. 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.

    #BeyondHAE: Talking to friends about HAE

    Play Episode Listen Later Oct 30, 2020 8:05


    This episode is all about telling people in your life about your HAE. Hear from members of the HAEA Youth Leadership Council as they discuss everything from telling friends about HAE to coaches and teachers. Sometimes it's hard for our peers to understand, but other times, our friends surprise us with how supportive they can be. 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.

    #BeyondHAE: Managing Stress (Ava)

    Play Episode Listen Later Oct 1, 2020 5:46


    Episode 19 is hosted by 10 year old Ava from California. Ava talks about the impact that stress has on her HAE attacks. She shares some strategies that she's learned over the years to cope with stress. 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.

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