HAE Speaks

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.

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Episode 22- Bobbi shares her HAE journey

HAE SpeaksJan 28, 2022

00:00

06:23

Summer Safety Tips with the HAEA Health Team

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

Jun 10, 202606:49

Roundtable with the HAEA CEO – A Conversation with KalVista’s Chief Commercial Officer

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

May 13, 202618:37

Perspectives from a Mother and Daughter with HAE

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

May 08, 202626:31

Supporting Adult Scholars in the HAE Community: Tina's Story

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.

Feb 26, 202630:46

Don't tough it out: Flip the Switch on HAE Attacks

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.

Feb 13, 202626:07

Episode 60: End of Year Legislative Update

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

Dec 17, 202527:48

Episode 59: What’s next for Hereditary Angioedema - What You Need to Know

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.

Dec 05, 202527:24

Episode 58: 10 Must-Ask Insurance Questions for HAE

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!

Oct 09, 202529:33

Episode 56: Understanding Medicare Enrollment

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.

Aug 21, 202521:30

Episode 55: CHAPTER-3 , Pharvaris Oral Prophylaxis Phase 3 Study

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!

Jul 07, 202512:30

Episode 54: How to Ease Your Mind

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!

Jun 18, 202533:54

Episode 53: Legislative Update from our Washington Office

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!

Jun 11, 202524:20

Episode 52: End of Progression: Understanding the Full Spectrum of a Bradykinin-mediated Angioedema Attack

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.

May 05, 202519:47

Episode 51: Legislative Series - Insights from Two Grassroots Leaders

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.

Apr 03, 202536:23

Episode 50: Innovations in HAE with KalVista

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!

Oct 31, 202425:56

Episode 49: Ahead of the Swell: Uncovering the Target That Could Stop Attacks

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.