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.
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!
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.
For more information, please visit www.haea.org.
We would like to thank CSL Behring for sponsoring this episode!
In this month's episode of the HAE Speaks podcast, we shine a spotlight on some of the most passionate and dedicated advocates within the Hereditary Angioedema Association (HAEA) community – our regional leaders. These individuals play a crucial role in advancing our advocacy efforts, ensuring that every voice is heard and that access to care remains a top priority.
Join us for this inspiring episode as we highlight the remarkable work of our regional leaders, Cedrick, Pamela, and Kate, and the profound impact of advocacy within the HAEA community!
For more information, please visit www.haea.org.
A special thanks to CSL Behring and Takeda for sponsoring the 2024 HAE Speaks Podcast Series!
Did you miss it? Tune in to our latest podcast episode as we bring you highlights from the Ask the Experts Q&A session at the 2023 US HAEA National Summit in Orlando, Florida.
In this episode, members of the US HAEA Medical Advisory Board address pressing questions and provide invaluable insights into the challenges and advancements in the field of Hereditary Angioedema (HAE). Listen in on this informative and enlightening discussion!
For more information, please visit www.haea.org.
A special thanks to CSL Behring and Takeda for sponsoring the 2024 HAE Speaks Podcast Series!
This month’s HAE Speaks Podcast episode features John, an individual with HAE, as he shares his inspiring journey of raising awareness cross-country. Join us as John recounts his innovative tactics and heartfelt efforts while traveling through twenty states, fundraising, and spreading awareness for HAE.
For more information, please visit www.haea.org.
A special thanks to CSL Behring and Takeda for sponsoring the 2024 HAE Speaks Podcast Series!
In this episode, we chat with Alecia, who shares her experiences hosting a memorial HAE walk in memory of her brother, Joseph Fairbanks Jr., who passed away due to HAE. Over 100 participants attended Alecia’s event in her hometown of Red Lake Nation, Minnesota!
For more information, please visit www.haea.org.
A special thanks to CSL Behring and Takeda for sponsoring the 2024 HAE Speaks Podcast Series!
Senior Nurse Advocate with over 20 years of experience working with HAE patients will discuss tips and recommendations for successfully navigating the busy holiday season with HAE.
For more information about Hereditary Angioedema please visit HAEA.org
This episode is brought to you by our sponsor: BioCryst Pharmaceuticals, Inc.
2023 was a busy year for the HAE community. Listen in as community members share their highlights of 2023.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
BioCryst Pharmaceuticals
Kate has lived with HAE all of her life but she does not let HAE control her life. Listen in as Kate shares her amazing feats and living her “dash” life.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
Dusty struggled for 25 years to find an HAE diagnosis. She was fortunate to find Mark who has been a great caregiver for her. The journey has been full of highs and lows. Listen in as they share their stories from her HAE journey.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
HAE Speaks Podcast - Episode 41: Back to School tips with Mandy
Amanda Grant, HAE Health Advocate shares advice to help you be prepared for back to school. She also shares many resources available through the HAEA to help guide conversations with the school.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors:
HAE Speaks Podcast - Episode 40: In this episode of HAE Speaks podcast Missy and Karissa discuss what it is like going away to college while living with HAE. Karissa shares some important lessons learned as well as tips and tricks to help you be more prepared for a great college experience.
For more information about Hereditary Angioedema please visit HAEA.org
Thank you to our sponsors: