HAE Speaks

HAE Speaks

Podkast av 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.

Alle episoder

59 Episoder
episode Episode 55: CHAPTER-3 , Pharvaris Oral Prophylaxis Phase 3 Study artwork
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!

07. juli 2025 - 12 min
episode Episode 54: How to Ease Your Mind artwork
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!

18. juni 2025 - 33 min
episode Episode 53: Legislative Update from our Washington Office artwork
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!

11. juni 2025 - 24 min
episode Episode 52: End of Progression: Understanding the Full Spectrum of a Bradykinin-mediated Angioedema Attack artwork
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.

05. mai 2025 - 19 min
episode Episode 51: Legislative Series - Insights from Two Grassroots Leaders artwork
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.

03. apr. 2025 - 36 min
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