HAE Speaks

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, a patient shares her journey from undiagnosed Hereditary Angioedema (HAE) in childhood, through battles with severe attacks as an adult, to two years attack-free and counting due to a clinical trial with a new prophylactic treatment option, ANDEMBRY ® (garadacimab-gxii). She emphasizes resilience and the importance of exploring new treatment options, which has allowed her to live attack-free for the first time in decades.

Her story is a testament to the power of not settling for “good enough” and the transformative impact of innovative treatments. Her doctor offers a medical perspective on the clinical impact of ANDEMBRY ®. Visit ANDEMBRY.com to learn more.

Thank you to our sponsor: CSL Behring

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.