Explore every episode of the podcast HAE Speaks

In this new HAE Speaks Podcast series, Tony (HAEA CEO & Chairman of the Board) sits down with Tom Groeling, Executive Director of Specialty Franchise at CSL.

Together, they discuss CSL's long-standing commitment to the HAE community and the company's vision for advancing care. The conversation also explores CSL's HAE therapies, ANDEMBRY® and HAEGARDA®, and provides an overview of their intended use, key features, and available support programs.

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.

Sponsored By: CSL

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

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

  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

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

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.

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.

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 for the HAE community.

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 episode of the HAE Speaks Podcast!

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!

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.

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. 

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!

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!

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!

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!

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!

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 Series!

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 Pharmaceuticals⁠

⁠Takeda

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

Episode 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 more information about Hereditary Angioedema please visit ⁠HAEA.org⁠

Thank you to our sponsors:

⁠BioCryst Pharmaceuticals⁠

⁠Kalvista Pharmaceuticals⁠

⁠Takeda

Episode 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

Episode 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

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

⁠Takeda

Episode 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

In 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

Takeda

In 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.

Kayla, 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

Takeda

In 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

In 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

Takeda

In 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

Takeda

In 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

Takeda

A 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.org

In 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

Takeda

In 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

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

Lisa 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

Takeda

Aysha 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

Takeda

Troyce, 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

Takeda

The 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

Takeda

Bobbi 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

BioMarin

In 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 Pharmaceuticals