Published by US HAEA
HAE Speaks, a podcast series on important Hereditary Angioedema (HAE) topics. Listen to patients, caregivers, and medical professionals discuss strategies to manage stress, prepare for a visit with your HAE specialist, care for a loved one with HAE, what to expect when you are newly diagnosed, the road to treatment, and much more.
Listen on Apple Podcasts17 min
In this month's episode of the HAE Speaks Podcast, the Warner-Mukes family shares their journey of living with Hereditary Angioedema (HAE) together. From navigating diagnosis and treatment to supporting one another through the challenges of daily life, they offer an honest conversation about what it means to face HAE as a family. Through their shared experiences, listeners will gain insight into the power of resilience, the importance of understanding each family member's perspective, and the strength that comes from navigating HAE together. Thank you to our 2026 Sponsors: BioCryst, CSL, IONIS, and Takeda
6 min
Join HAEA Director of Health & Research Services, Troyce Venturella, and HAEA Health Services Manager, Mandy Granat, as they discuss important summer safety considerations for individuals and families living with HAE. The conversation is designed to help the HAEA community stay safe, healthy, and prepared while enjoying summer activities with family and friends! Thank you to our 2026 Sponsors: BioCryst, CSL, IONIS, and Takeda
18 min
In this new HAE Speaks Podcast series, Roundtable with the CEO , HAEA CEO & Chairman of the Board, Tony Castaldo, sits down with Nicole Sweeny, Chief Commercial Officer at KalVista Pharmaceuticals. Tony and Nicole discuss KalVista’s mission and aspirations for the future health of the HAEA community. They also address EKTERLY® , a newly approved oral, on-demand HAE treatment option, and provide practical insights into KalVista’s programs for access, insurance coverage, and efforts to expand treatment options for children. Note: This podcast is for educational purposes only and is not meant to provide medical advice. The HAEA is company- and product neutral. We don’t endorse specific therapies and we don’t compare products. Treatment comparisons and selection are the sole responsibility of people with HAE and their physicians. For more information, please visit www.haea.org . Sponsored By: KalVista Pharmaceuticals
26 min
In this episode of HAE Speaks, Cheryl and her daughter Leah share their powerful journey living with hereditary angioedema (HAE) across generations. Together, they open up about navigating diagnosis, managing life with HAE, and the unique perspective of both a parent and child living with the condition. They also highlight the importance of advocacy, both within the healthcare system and the broader community, and offer insight into how others can get involved, raise awareness, and make a meaningful impact. Sponsored by: BioCryst Pharmaceuticals
30 min
In this episode, we hear from Tina S., an individual living with HAE and an adult recipient of the Pam King HAEA Scholarship. Tina shares her journey, the impact of the scholarship, and how educational support can make a difference for individuals affected by HAE, regardless of age or stage of life. Learn more about the HAEA Scholarships by visiting: https://www.haea.org/pages/p/scholarships Thank you to our 2026 sponsors: BioCryst, CSL Behring, IONIS Pharmaceuticals, and Takeda.
26 min
Dr. Andrew Smith and Craig, an individual living with HAE, share insights on recognizing HAE attacks, understanding response strategies, and navigating day-to-day management. Through both clinical perspective and personal experience, they explore why timely response matters and how education can empower the HAE community. Together, they discuss why you don’t have to “tough it out,” how timely action can make a difference, and the importance of understanding your options when managing attacks. Thank you to Ionis Pharmaceuticals for sponsoring this episode of the HAE Speaks Podcast.
27 min
In this month's HAE Speaks Podcast episode, welcome back Dane Christiansen for a comprehensive end-of-year legislative update. Dane breaks down the key policy developments, federal priorities, and advocacy efforts that shaped 2025, and what they mean for the HAE community moving into the new year. Thank you to our sponsors: CSL Behring, IONIS Pharmaceuticals, and Pharvaris
27 min
This episode re-visits the HAEA National Summit session from HAE Expert and US HAEA Medical Advisory Board Member, Dr. Marc Riedl, as he offers a crucial look at the future of HAE care. The discussion focuses on the rapidly advancing treatment landscape, covering the latest novel therapies in development, and how these advances aim to improve treatment efficacy, convenience, and quality of life for the HAE community.
29 min
In this episode, HAEA Nurse Case Managers, Troyce Venturella and Mandy Granat, share their 10 must-ask insurance questions for people living with HAE. Learn how to better understand your coverage, prepare for renewals, and advocate for the care you need. Navigating insurance can be challenging, but you don’t have to do it alone!
21 min
In this episode, HAE Health Services Manager Troyce Venturella sits down with Marie , an individual living with HAE who has navigated the complexities of Medicare enrollment firsthand. Together, they discuss the key steps, challenges, and considerations in selecting the right Medicare plan, offering valuable insights for others in the HAE community as they make important healthcare decisions.
12 min
In 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!
33 min
In 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!
24 min
Tune 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 Medicaid Restructuring 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!
19 min
In 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 like to thank Pharvaris for sponsoring this episode of the HAE Speaks Podcast.
36 min
In 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.
25 min
This 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!
28 min
As 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!
20 min
In 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.org. A special thanks to CSL Behring and Takeda for sponsoring the 2024 HAE Speaks Podcast Series!
48 min
Did 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 Series!
20 min
This 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!