Shows
HAE SpeaksEpisode 55: CHAPTER-3 , Pharvaris Oral Prophylaxis Phase 3 StudyIn this episode of the HAE Speaks Podcast, Dr. Raffi Tachdjian (UCLA) and Pharvaris discuss the HAE CHAPTER-3 Study — a new HAE attack prevention trial currently enrolling. The study explores the safety and effectiveness of deucrictibant, an investigational once-daily oral treatment aimed at preventing HAE attacks.Thank you to Pharvaris for sponsoring this episode of the HAE Speaks Podcast!2025-07-0712 minHAE SpeaksEpisode 54: How to Ease Your MindIn this month’s episode of the HAE Speaks podcast, Ionis Patient Education Managers, Danielle and Kia, talk to a certified mindfulness meditation teacher, Anne, about practices and tips for meditation that you can incorporate into your daily routine. We hope this conversation will give you the knowledge and motivation to try it for yourself!Thank you to Ionis Pharmaceuticals for sponsoring this episode of the HAE Speaks Podcast!2025-06-1833 minHAE SpeaksEpisode 53: Legislative Update from our Washington OfficeTune into the latest episode of our “Legislative Series” of the HAE Speaks Podcast where we have a conversation with Dane Christiansen from our Washington office about pressing advocacy updates including: Potential cuts to MedicaidRestructuring at federal agencies The executive order on drug pricing Whether you’re just beginning your advocacy journey or looking to stay informed, this episode is packed with valuable information you don’t want to miss!2025-06-1124 minHAE SpeaksEpisode 52: End of Progression: Understanding the Full Spectrum of a Bradykinin-mediated Angioedema AttackIn this month’s episode of the HAE Speaks Podcast, please join Raffi Tachdjian, MD, MPH, Associate Clinical Professor, David Geffen School of Medicine at UCLA, and Kenny Robinson, MD, Head of Medical Affairs, North America at Pharvaris, for a discussion about the full spectrum of a bradykinin-mediated angioedema attack. This podcast episode highlights the experience of the physician and those living with bradykinin-mediated angioedema, explores the nuances of attack progression and resolution, and shares strategies to inform clinical assessment and improve outcomes for individuals with HAE.We would lik...2025-05-0519 min
#BeyondHAE Youth Produced Podcast#BeyondHAE Podcast: Young Advocates on Capitol Hill Fighting for Rare Disease PolicyIn 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 wher...2025-05-0121 minHAE SpeaksEpisode 51: Legislative Series - Insights from Two Grassroots LeadersIn this month’s episode of the HAE Speaks Podcast, we hear from Craig, a person with HAE, and his wife and caregiver, Melissa. They reflect on their powerful experiences during Rare Disease Week in Washington, D.C.Tune in to hear how their partnership, perseverance, and passion are helping to raise awareness, influence change, and bring the voice of the HAE community to policymakers on Capitol Hill. 2025-04-0336 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Meet 2024 Social Media Interns - Jason and TylerIn 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...2025-02-2808 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Meet the Newest Members of the HAEA's Youth Leadership Council Kaylee and KiarraIn 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...2025-02-1409 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Meet HAEA Youth Leadership Council Members - Kati and EllaIn 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...2025-02-0310 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Meet the Newest Members of the HAEA's Youth Leadership Council Cassidy and SkylarIn 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...2025-01-3109 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Meet 2024 Social Media Intern - KailaniIn 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...2025-01-1710 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Meet HAEA Youth Leadership Council Members - Caroline and AveryThe #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...2025-01-1009 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Meet the HAEA's Youth Leadership Council's Newest Member SullyThe #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...2024-12-3010 min#BeyondHAE Youth Produced Podcast#BeyondHAE Podcast: A Day in the Life - Jasmeen's Journey of ResilienceIn 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...2024-11-0418 minHAE SpeaksEpisode 50: Innovations in HAE with KalVistaThis month's episode of the HAE Speaks podcast spotlights the innovative strides KalVista is making to improve care for people within the HAE community. It will offer insights into KalVista’s dedication to the HAE community by addressing unmet needs in HAE management and an overview of their clinical development program.
Join hosts Nicole Sweeny, Chief Commercial Officer and Michael Smith, Senior Vice President of Development as they are interviewed by Linda, a Person Living with HAE.
Thank you to KalVista for sponsoring this episode!
2024-10-3125 min#BeyondHAE Youth Produced Podcast#BeyondHAE BONUS Episode: Empowering Youth Voices: Ally & Luke's Journey in Legislative AdvocacyIn 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 m...2024-10-0217 min#BeyondHAE Youth Produced Podcast#BeyondHAE: A Day in the Life of ZachIn 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 th...2024-08-3016 minHAE SpeaksEpisode 49: Ahead of the Swell: Uncovering the Target That Could Stop AttacksAs a rare condition, understanding the root cause of Hereditary Angioedema (HAE) is crucial for improving patient management and care. On this episode of the HAE Speaks podcast, doctors Raffi Tachdjian, MD, MPH and Jay Kashkin, MD, dive deep into the critical role of factor XIIa on the HAE pathway.
For more information, please visit www.haea.org.
We would like to thank CSL Behring for sponsoring this episode!2024-08-2028 minHAE SpeaksEpisode 48: Spotlight on HAEA Grassroots Advocacy Network Regional LeadersIn this month's episode of the HAE Speaks podcast, we shine a spotlight on some of the most passionate and dedicated advocates within the Hereditary Angioedema Association (HAEA) community – our regional leaders. These individuals play a crucial role in advancing our advocacy efforts, ensuring that every voice is heard and that access to care remains a top priority.
Join us for this inspiring episode as we highlight the remarkable work of our regional leaders, Cedrick, Pamela, and Kate, and the profound impact of advocacy within the HAEA community!
For more information, please visit www.haea.or...2024-08-0520 minHAE SpeaksEpisode 47: US HAEA National Summit Ask the Experts Q&ADid you miss it? Tune in to our latest podcast episode as we bring you highlights from the Ask the Experts Q&A session at the 2023 US HAEA National Summit in Orlando, Florida.
In this episode, members of the US HAEA Medical Advisory Board address pressing questions and provide invaluable insights into the challenges and advancements in the field of Hereditary Angioedema (HAE). Listen in on this informative and enlightening discussion!
For more information, please visit www.haea.org.
A special thanks to CSL Behring and Takeda for sponsoring the 2024 HAE Speaks Podcast...2024-05-2948 min#BeyondHAE Youth Produced Podcast#BeyondHAE Podcast: A Day in the Life of Caregiver KailaniJoin 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...2024-05-0223 minHAE SpeaksEpisode 46: My Cross-Country Trip Across the United States to Raise HAE AwarenessThis month’s HAE Speaks Podcast episode features John, an individual with HAE, as he shares his inspiring journey of raising awareness cross-country. Join us as John recounts his innovative tactics and heartfelt efforts while traveling through twenty states, fundraising, and spreading awareness for HAE.
For more information, please visit www.haea.org.
A special thanks to CSL Behring and Takeda for sponsoring the 2024 HAE Speaks Podcast Series!2024-04-0120 min#BeyondHAE Youth Produced Podcast#BeyondHAE Podcast: A Day in the Life of CarolineDive 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...2024-03-0415 minHAE SpeaksEpisode 45: HAEA DIY Community Events - Red Lake Nation HAE Awareness WalkIn this episode, we chat with Alecia, who shares her experiences hosting a memorial HAE walk in memory of her brother, Joseph Fairbanks Jr., who passed away due to HAE. Over 100 participants attended Alecia’s event in her hometown of Red Lake Nation, Minnesota!
For more information, please visit www.haea.org.
A special thanks to CSL Behring and Takeda for sponsoring the 2024 HAE Speaks Podcast Series!2024-02-0511 min#BeyondHAE Youth Produced Podcast#BeyondHAE Podcast: A Day in the Life of BrynWe 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...2023-12-2927 minHAE SpeaksHAE, the holidays and you. Navigating the holiday season with HAESenior 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.2023-12-1907 minHAE SpeaksEpisode 44: A word from the HAE Community
2023 was a busy year for the HAE community. Listen in as community members share their
highlights of 2023.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Kalvista Pharmaceuticals
Takeda
2023-11-3010 min
#BeyondHAE Youth Produced Podcast#BeyondHAE Digging Deeper Interview Series: The Parent Perspective (Nikia)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 t...2023-11-0125 minHAE SpeaksEpisode 43: Kate is living Beyond HAEKate has lived with HAE all of her life but she does not let HAE control her life. Listen in as Kate shares her amazing feats and living her “dash” life.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Kalvista Pharmaceuticals
Takeda
2023-11-0141 minHAE SpeaksEpisode 42: Dusty & Mark’s HAE JourneyDusty struggled for 25 years to find an HAE diagnosis. She was fortunate to find Mark who has been a great caregiver for her. The journey has been full of highs and lows. Listen in as they share their stories from her HAE journey.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Kalvista Pharmaceuticals
Takeda
2023-10-0136 minHAE SpeaksEpisode 41: Back to School tips with Mandy
HAE Speaks Podcast - Episode 41: Back to
School tips with Mandy
Amanda
Grant, HAE Health Advocate shares advice to help you be prepared for back to
school. She also shares many resources
available through the HAEA to help guide conversations with the school.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Kalvista Pharmaceuticals
Takeda
2023-09-0120 min#BeyondHAE Youth Produced Podcast#BeyondHAE Digging Deeper Interview Series: Overcoming Barriers to Pursue A Passion for Filmmaking (Natalie)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...2023-08-3038 minHAE SpeaksEpisode 40: College preparedness & HAE
HAE Speaks Podcast - Episode 40: In this episode of HAE Speaks podcast Missy and Karissa discuss what it is like going away to college while living with HAE. Karissa shares some important lessons learned as well as tips and tricks to help you be more prepared for a great college experience.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Kalvista Pharmaceuticals
Takeda
2023-08-0120 minHAE SpeaksEpisode 39: The importance of mindfulnessEpisode 39: Adina Mauk:HAEA Health Advocate, shares the importance of mindfulness along with tips and tricks.
Looking for ideas and methods for self-care?
Adina has just the information you are looking for. In this episode of
the HAE Speaks podcast Adina talks about her journey to self-care.
Living with HAE can be stressful both for someone
living with HAE as well as for caregivers. Mindfulness can help you focus
on what you are sensing and feeling in the moment and be used as a tool for effectively managing this stress.
For...2023-07-0517 min
#BeyondHAE Youth Produced Podcast#BeyondHAE Digging Deeper Interview Series: Studying Abroad with HAE (Nathan)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.
...2023-07-0118 minHAE SpeaksEpisode 38: Hosting an HAE DIY eventEpisode 38: In this episode of HAE Speaks podcast learn more about hosting an HAE DIY event. Missy speaks with Mike about DIY events and many of the resources available from the HAEA to assist you with your event. Also, listen in as Missy sits down with Lora and participants at the Lyndon Memorial Walk, a DIY HAE awareness event.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Kalvista Pharmaceuticals
Takeda
2023-06-0122 minHAE SpeaksEpisode 37: Transitioning to CaregiverEpisode 37: In this episode of the HAE Speaks podcast Missy talks with Bobbi and
Mike about their journey of living with HAE and also the transition of becoming
caregivers for their children diagnosed with HAE.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Kalvista Pharmaceuticals
Takeda
2023-05-1515 min
#BeyondHAE Youth Produced Podcast#BeyondHAE Digging Deeper Interview Series: My caregiver journey (Eliana)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...2023-05-0125 minHAE SpeaksEpisode 36: Dr. Riedl discusses the HAEA shared decision making tool.Episode 36: Dr. Riedl discusses the HAEA shared decision making tool. A free tool available at HAEA.org to help individuals living with HAE prepare for their physician appointments.
Dr. Riedl:
Allergist/Immunologist
Clinical Director of UC San Diego Health's U.S. HAEA Angioedema Center
Professor of Medicine
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Kalvista Pharmaceuticals
Takeda2023-04-0615 minHAE SpeaksEpisode 34: Lora's HAE JourneyEpisode 35: Lora shares her HAE journey as well as how she spreads HAE awareness nationwide.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Kalvista Pharmaceuticals
Takeda
2023-03-1316 minHAE SpeaksEpisode 32: Navigating college with HAEIn this episode, Kelsie talks about her HAE journey and navigating college with HAE.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Kalvista Pharmaceuticals
Takeda2023-03-0921 minHAE SpeaksGene Therapy in HAE: A look into BioMarin’s Investigational StudyIn this episode, BioMarin’s Clinical Science Lead, Jack Brownrigg, and HAE physician, Dr. Timothy Craig, discuss AAV Gene Therapy and BioMarin’s investigational clinical trial for HAE.
For more information about Hereditary Angioedema please visit HAEA.org
This episode is brought to you by our sponsor: BioMarin Pharmaceutical Inc.2023-02-0616 min
HAE SpeaksEpisode 34: A Newly Diagnosed PerspectiveKayla, an individual with HAE, shares her perspective on being recently diagnosed with HAE, advocating for herself, and her journey to a diagnosis.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Kalvista Pharmaceuticals
Takeda2023-01-3124 minHAE SpeaksEpisode 32: HAEA year in reviewIn this episode of the HAE Speaks podcast, the HAEA staff talks about their accomplishments in 2022. Listen now to hear what resources are available!
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
BioMarin
CSL Behring
Takeda
2023-01-0946 min
#BeyondHAE Youth Produced Podcast#BeyondHAE Digging Deeper Interview Series: My brother has HAE (Avery)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 t...2022-12-3014 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: HAEA Round Table: Young Adults (Kayla, Jack, and Morgan)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...2022-12-0239 minHAE SpeaksEpisode 31- Jess shares the importance of Advocating for HAEIn this episode of the HAE Speaks podcast, Jess talks about the importance of advocacy and how you can get involved.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
BioMarin
CSL Behring
Takeda2022-11-0113 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: My HAE Diagnosis and Management Journey (Ally)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...2022-10-3107 minHAE SpeaksEpisode 30- Adina's HAE journeyIn this episode of the HAE Speaks podcast we hear from HAEA staff member Adina. Adina shares her HAE journey from diagnosis to today.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
BioMarin
CSL Behring
Takeda2022-10-0617 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Commemorating HAE Youth Advocacy Month with a talk about advocacy and awarenessThis 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...2022-09-2813 minHAE SpeaksEpisode 29- Bobbi shares her journey with HAEIn this episode Bobbi shares her journey with HAE as a person diagnosed with HAE, turning into also a caregiver, and how her and her girls are living a great life with HAE.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
BioMarin
CSL Behring
Takeda2022-09-0815 minHAE SpeaksOrladeyo: Red shares his HAE journeyA message from our Sponsor: BioCryst Pharmaceuticals:
In this episode of the HAE Speaks podcast, we listen to Red share his experience with HAE and preventing attacks with ORLADEYO® (berotralstat), the once daily oral treatment.
For more information on ORLADEYO, including the full prescribing and important safety information, visit www.ORLADEYO.com.
For more information about Hereditary Angioedema please visit HAEA.org2022-08-2311 minHAE SpeaksEpisode 28- Troyce provides tips about going back to schoolIn this episode of the HAE Speaks podcast, Troyce provides tips about going back to school while having HAE. Troyce provides insight at each level of school, beginning with kindergarten and all the way through college, attending school while at home and also away from home.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
BioMarin
CSL Behring
Takeda2022-08-0109 min
HAE SpeaksEpisode 27- Abby shares her insights about the HAEA Brady ClubIn this episode of the HAE Speaks podcast, we listen to Abby share her experience and excitement about being a part of the HAEA Brady club.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
BioMarin
CSL Behring
Takeda
2022-07-0108 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: HAEA Round Table: Anxiety, Stress, and Growth with HAEThis 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...2022-07-0125 min
HAE SpeaksEpisode 26- Missy & Sarah discuss the 2022 HAE IN-MOTION®The 2022 HAE IN-MOTION® - Step it up for HAE virtual challenge registration is open. In this episode, hear tips, tricks, and advice from a past participant. Register now at HAEA.org. For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
BioMarin
Takeda
2022-05-3112 min
HAE SpeaksEpisode 25- Lisa & Mike share information about HAE day :-) 2022Lisa and Mike tell us about the 2022 HAE day :-) campaign. Register now at HAEA.org. For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
BioMarin
Takeda2022-05-0519 min
#BeyondHAE Youth Produced Podcast#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 an...2022-05-0220 min
HAE SpeaksEpisode 24- Aysha shares her HAE journeyAysha shares her story of living with HAE and describes her journey of finding a diagnosis.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
BioMarin
Takeda2022-04-0125 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: An Interview with Lisa Facciolla (Sydney & Lisa)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.2022-03-2808 min
HAE SpeaksEpisode 23- Troyce provides tips about insurance in 2022Troyce, an HAEA Health team member, provides information and tips about insurance in 2022.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
BioMarin
Takeda2022-02-2806 minHAE SpeaksEpisode 20- HAEA Year in ReviewThe Hereditary Angioedema Association continues to be the galvanizing force advocating and supporting the HAE community. In this episode, the HAEA staff provides a review of 2021 programs and accomplishments.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Ionis Pharmaceuticals
Takeda2022-01-2826 min
HAE SpeaksEpisode 22- Bobbi shares her HAE journeyBobbi shares her story of living with HAE and describes how the evolution of treatments has vastly improved over the years.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
BioMarin2022-01-2806 min
HAE SpeaksEpisode 21- HAEA Meet and Greet EventsIn this episode, Mike and Missy discuss HAEA Meet and Greet events, and answer some important questions. What is an HAEA Meet and Greet? Who should attend? Why should you attend?
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals2022-01-0307 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: How Advocacy and Awareness Has Impacted My Life (Emma)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.
2021-10-2904 min
HAE SpeaksEpisode 19- Jenny's HAE JourneyJenny talks about how she handles having HAE and putting herself first when she is not having the best of days. Jenny is a huge advocate of self care, especially as a person living with a rare disease.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Ionis Pharmaceuticals
Takeda2021-10-2735 minHAE SpeaksEpisode 18- Christine and Mike: Capitol Hill CampaignIn this episode Christine and Mike discuss the US HAEA Virtual Capitol Hill Campaign and the importance of advocating for the HAE.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Ionis Pharmaceuticals
Takeda2021-10-0417 min
HAE SpeaksEpisode 17- Antonio and Jack: HAEA DIY eventsIn this episode of the HAE speaks podcast Antonio and Jack talk about their DIY event. They discuss how the idea started and their game plan to make the event a success.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Ionis Pharmaceuticals
Takeda2021-08-3009 min
HAE SpeaksEpisode 16: Sonia's HAE JourneyIn this episode of HAE Speaks podcast Sonia discusses her journey with HAE and how much life has changed since diagnosis.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Ionis Pharmaceuticals
Takeda
2021-07-3015 min
HAE SpeaksEpisode 15: Lisa: HAE IN-MOTION®Lisa talks about the HAE IN-MOTION® Event that she and her family participate in. Enjoying walks together as a family, and entering in the weekly photo contest. Also, Lisa talks about promoting the event on Facebook.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Ionis Pharmaceuticals
Takeda2021-06-3011 min
HAE SpeaksEpisode 14: Chaeli: HAE and TravelChaeli discusses traveling with HAE. She talks about how she prepares to travel by car and plane.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Ionis Pharmaceuticals
Takeda2021-05-2812 min
HAE SpeaksEpisode 13: Lisa: HAE eventsIn this episode of HAE Speaks, Lisa talks about how Team Jack started. Lisa also discusses all of the DIY HAE events Team Jack hosts and attends each year.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Ionis Pharmaceuticals
Takeda2021-05-0419 minHAE SpeaksEpisode 12: Jess's HAE JourneyEpisode 12 is hosted by Jess, an HAE patient and HAEA team member. She talks about her journey through diagnosis, her experience traveling abroad, and what she would tell her younger self when she was first diagnosed with HAE.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Ionis Pharmaceuticals
Takeda2021-04-0625 min
HAE SpeaksEpisode 11: HAE and EducationIn this episode, Missy, Marti and Marna talk about speaking with your children’s school and teachers of their HAE diagnosis. As mothers of children with HAE, they emphasize the importance of keeping the school up to date about HAE.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Ionis Pharmaceuticals
Takeda2021-03-0125 minHAE SpeaksEpisode 10: Hannah's HAE JourneyHannah C., an HAE patient, and HAEA team member, talks about her HAE journey, including growing up with an HAE diagnosis, attending school, and overall life while having HAE.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Ionis Pharmaceuticals
Takeda2021-02-0109 min
HAE SpeaksEpisode 9: HAE and pregnancyStephanie speaks with Missy about her HAE journey during her pregnancies.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsor
Ionis Pharmaceuticals
2021-01-0406 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: 5 Years Can Make a BIG Difference (Luke)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.
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...2020-12-3004 minHAE SpeaksEpisode 8: 2020 Team HAEAAs you may already know, the HAEA has adapted to the uncertainty provoked by the COVID-19 pandemic by swiftly transitioning our 2020 scheduled programs and events to fun and engaging virtual platforms. In just a few months, we have successfully developed and launched interactive contests, advocacy training modules, virtual Meet & Greet events, and more to fulfill the needs of the HAEA community. We have also increased the number of webinars and their content. Listen as HAEA staff discuss how together, we have adapted to this virtual world.2020-11-2927 min
HAE SpeaksEpisode 7: HAEA SupportIn this episode of HAE Speaks we connect with Marna and Adina to learn more about the HAEA Support Groups.2020-11-0212 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Talking to friends about HAE (HAEA YLC)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...2020-10-3008 min
HAE SpeaksEpisode 6: Advocating for HAELinda P. provides insight to her HAE journey and tips about creating HAE awareness.2020-09-2107 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Maddie's StoryThis episode is hosted by Youth Leadership Council member and HAEA Social Media Intern, Maddie. In this episode, Maddie shares her HAE journey, from her diagnosis and many hospital visits, to becoming part of the HAEA Youth community and advocating for the HAE community on Capitol Hill.
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.2020-08-3108 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Being Different is Normal (Kobe)This episode is hosted by Kobe from Georgia. Kobe asks the question, what does it mean to be normal? As a young person with a chronic disease, many of us understand that we are a little different from our peers. As Kobe describes in this episode, being different is actually more normal than many of us realize.
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...2020-08-3108 min
HAE SpeaksEpisode 5: Road to TreatmentMichael G. shares his road to treatment and overcoming his fear of needles.2020-08-2112 min
HAE SpeaksEpisode 4: Life before and after an HAE diagnosis of a child.Episode 4 - Mandy is a mother and caregiver to her son, Luke. Listen as Mandy shares a part of their journey, life before and after an HAE diagnosis of a child.2020-08-0316 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Back to School Tips with the HAEA Youth Leadership CouncilThis special BONUS episode of the #BeyondHAE podcast is a roundtable discussion with the HAEA Youth Leadership Council. Hear from members of the HAEA Youth community as they share some of their back to school tips and tricks.
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.2020-07-2908 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Advocating for yourself at school (Gabriela P.)This episode of the #BeyondHAE Podcast hosted by Gabriela who talks about why it is important to speak up for yourself at school. While it’s not always easy to talk to the administration at school about your HAE, it’s important.
If you'd like more information about 504 plans, here is the link that is referenced in Gabriela's episode: https://www.understood.org/en/school-learning/special-services/504-plan/7-steps-to-getting-a-50 4-plan-for-your-child
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...2020-07-2908 minHAE SpeaksEpisode 3: Ongoing Research for New HAE treatments.Tony Castaldo, CEO of the HAE Association provides an information packed update on the new HAE treatments that are being developed by 9 companies. Tune in to this podcast for the latest exciting details about this vitally important HAE research.
Here is a list of companies and their websites listed in order as they are discussed in the podcast.
BioCryst: www.biocryst.com
Kalvista: www.kalvista.com
Phavaris: pharvaris.com
Attune Pharmaceuticals: attunepharma.com
CSL Behring: www.cslbehring.com
BioMarin: www.biomarin.com
RegenxBio: w...2020-07-0313 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Independence and Self-Administration (Sophia)Episode 11 of the #BeyondHAE podcast is hosted by 16 year old Sophia, from Connecticut. This episode is all about Sophia’s road to independence and control over her HAE attacks. She talks about how self-administration has contributed to feeling confident and managed, and how finding the right medication has impacted her HAE 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 ne...2020-07-0105 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Travel Tips (Kyleigh)This episode is hosted by 18 year old Kyleigh, from Texas. Kyleigh’s episode is all about travel tips to make traveling smooth and easy for people with HAE.. Although many of us might not be traveling at this time, it’s important to be prepared when you leave home for any amount of time. Tune into Kyleigh’s episode to learn more about how you can prepare if you must travel.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization serving the needs...2020-06-2505 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Interview with my Mom (Carlie)Episode 10 is hosted by Carlie from Louisiana. In this episode Carlie interviews her mom Mary, and they talk about everything from how they support each other to navigating relationships and friendships. Carlie and Mary provide some tips to support young people in relationship building with peers.
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.h...2020-06-0307 minHAE SpeaksEpisode 2: COVID interviewsMissy interviews an HAE patient, caregiver and two Brady Club youngsters about COVID. Each of them with great ideas and tips during this time.2020-06-0227 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: The Impact of COVID-19 on our lives and our HAE (HAEA Youth & HAEi Youngsters Collaboration)BONUS Episode! The HAEA Youth and the HAEi Youngsters have come together to collaborate on this special episode of the #BeyondHAE Podcast. This roundtable discussion is all about the impact that COVID-19 (Coronavirus) has had on the lives of young people with HAE around the world. Hear from young adults living in South Africa, Greece, and the US about how their lives have been impacted by this unprecedented international crisis.
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...2020-05-2222 min
Che's Channel - Te Paepae WahoHaea te pō kia ara mai te rā, ka ao, ka ao, ka awateaHaea te pō kia ara mai te rā, ka ao, ka ao, ka awatea. Tīhei mouri ora!. Hope you have a great day.2020-05-2106 min
#BeyondHAE Youth Produced Podcast#BeyondHAE: Navigating Friendships and HAE (Jasmeen)Episode 9 is hosted by Jasmeen, from New Mexico. This episode is all about navigating friendships. Jasmeen talks about her experience telling her peers about HAE and how sometimes this experience unveiled false friends. But there are lessons to learn with every experience and Jasmeen shares how this experience has taught her important lessons along the way.
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...2020-05-1804 minHAE SpeaksEpisode 1: Life as a Caregiver (Missy M.)Episode 1
HAE Speaks Podcast:
Missy M. shares a glimpse into her life as an HAE caregiver for her husband Mike.
For more information about HAE and the US Hereditary Angioedema Association please visit HAEA.org2020-05-0115 minHAE SpeaksWhat is HAE?A brief overview of HAE and the Hereditary Angioedema Association.2020-05-0102 min#BeyondHAE Youth Produced Podcast#BeyondHAE: Anxiety and HAE (Jack)Episode 8 of the #BeyondHAE Podcast is hosted by 14-year-old Jack from New Jersey. Jack’s HAE attacks have always been pretty manageable until he experienced his first throat swell and began to feel overwhelming anxiety as a result. Listen to May’s #BeyondHAE podcast episode to hear Jack’s story and how he learned to overcome his anxiety.
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 in...2020-04-2904 min#BeyondHAE Youth Produced Podcast#BeyondHAE: How I Advocate for HAE (Stephen)Episode 7 is hosted by Stephen, from Ohio. Stephen’s dad and his little sister Abby both have HAE; and although Abby has yet to have her first attack, Stephen has realized that he can help her have a brighter future by participating in HAE advocacy. In this episode of the #BeyondHAE podcast, Stephen talks about a few of the fun ways that he raises awareness about HAE and how he has become a proud HAE advocate.
This youth produced podcast is brought to you thanks to the support of the Hereditary Angioedema Association, a patient advocacy organization se...2020-03-3004 min#BeyondHAE Youth Produced Podcast#BeyondHAE: We're in Washington, DC for HAEA's Capitol Hill DayEpisode 2 was recorded live in Washington, DC during the Hereditary Angioedema Association's Capitol Hill Day. This is a day when over 90 HAE patients and caregivers from across the nation come together in our nation’s capitol and meet with their congressional representatives to advocate for continuous support for HAE patients and their needs. Hear from hosts, Jack, Ava, and Stephen as they talk about what it means to be a young person participating in this event and advocating to their congressional leader. Each host shares a story about their experience and talks about why advocating is so important to our co...2019-11-0203 min