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HAE Speaks

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Rating
★★★★☆
4.3
from
6 reviews
This podcast has
73 episodes
Language
English
Publisher
US HAEA
Explicit
No
Date created
2020/05/08
Latest episode
2026/10/06
Average duration
21 min.
Release period
33 days

Description

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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Check latest episodes from HAE Speaks podcast


Choosing Coverage with Confidence: An HAE Patient's Guide to Open Enrollment with CSL
2026/10/06
Learn what to consider when choosing a health insurance plan during Open Enrollment. The conversation covers medication coverage, prior authorizations, specialty pharmacies, out-of-pocket costs, provider networks, and helpful questions to ask before selecting a plan. Sponsored by: CSL
End of Year Legislative Update: What it Means for the HAEA Community
2026/10/06
In this episode, HAEA Advocacy Director, Jess Myers, sits down with Dane Christiansen, the Managing Partner of the Health and Medicine Counsel of Washington, for a special end-of-year legislative update. Together, they discuss what has happened this year in healthcare policy, key issues impacting the HAEA community, and how you can support these HAEA Advocacy efforts.
Transitioning to Medicare: Helpful Insights from the HAEA Health Team
2026/10/06
In this episode, two compassionate advocates for the health and wellbeing of our community, Troyce Venturella, HAEA Director of Health & Research Services, and Mandy Granat, HAEA Health Services Manager, discuss what individuals living with HAE should consider when transitioning to Medicare.  The conversation explores enrollment timelines, Medicare plan options, medication coverage, financial assistance, and resources available to help individuals research their options and plan ahead.
HAE Speaks: Roundtable with the CEO - Tony Has a Conversation with a CSL Executive Director
2026/08/20
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
Stronger Together: One Family's HAE Journey
2026/08/01
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
Summer Safety Tips with the HAEA Health Team
2026/06/10
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
Roundtable with the HAEA CEO – A Conversation with KalVista’s Chief Commercial Officer
2026/05/13
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
Perspectives from a Mother and Daughter with HAE
2026/05/08
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
Supporting Adult Scholars in the HAE Community: Tina's Story
2026/02/26
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.
Don't tough it out: Flip the Switch on HAE Attacks
2026/02/13
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.
Episode 60: End of Year Legislative Update
2025/12/17
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
Episode 59: What’s next for Hereditary Angioedema - What You Need to Know
2025/12/05
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.
Episode 58: 10 Must-Ask Insurance Questions for HAE
2025/10/09
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!
Episode 56: Understanding Medicare Enrollment
2025/08/21
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.
Episode 55: CHAPTER-3 , Pharvaris Oral Prophylaxis Phase 3 Study
2025/07/07
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!

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