HAE Speaks

US HAEA
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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.

  1. 17/12/2025

    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

    28 min

  2. 05/12/2025

    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.

    27 min

  3. 09/10/2025

    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!

    30 min

  4. 21/08/2025

    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.

    22 min

  5. 07/07/2025

    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!

    13 min

  6. 18/06/2025

    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!

    34 min

  7. 11/06/2025

    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!

    24 min

  8. 05/05/2025

    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.

    20 min
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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.

Información

  • Creador
    US HAEA
  • Años de actividad
    2020 - 2025
  • Episodios
    63
  • Clasificación
    Apto
  • Copyright
    © 095617
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    HAE Speaks