HAE Speaks

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:...

  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, an...

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 broad...

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...

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 acti...

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

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 fo...

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!

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.

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!

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 e...

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...

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 liv...

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 Hi...

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...

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 t...

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...

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 thi...

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...

In 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 Se...

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.

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

Kate 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

Dusty 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

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 Ph...