HAE Speaks (US HAEA)

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:

⁠BioCryst Pharmaceuticals⁠

⁠Kalvista Pharmaceuticals⁠

⁠Takeda

In this episode of HAE Speaks, Lisa talks about how Team Jack started. Lisa also discusses all of the DIY HAE events Team Jack hosts and attends each year.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Ionis Pharmaceuticals

Takeda

Aysha shares her story of living with HAE and describes her journey of finding a diagnosis.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

BioMarin

Takeda

Episode 38: In this episode of HAE Speaks podcast learn more about hosting an HAE DIY event.  Missy speaks with Mike about DIY events and many of the resources available from the HAEA to assist you with your event. Also, listen in as Missy sits down with Lora and participants at the Lyndon Memorial Walk, a DIY HAE awareness event.

For more information about Hereditary Angioedema please visit ⁠HAEA.org⁠

Thank you to our sponsors:

⁠BioCryst Pharmaceuticals⁠

⁠Kalvista Pharmaceuticals⁠

⁠Takeda

In this episode, Kelsie talks about her HAE journey and navigating college with HAE. 

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Kalvista Pharmaceuticals

Takeda

Episode 1

HAE Speaks Podcast: 

Missy M. shares a glimpse into her life as an HAE caregiver for her husband Mike.  

For more information about HAE and the US Hereditary Angioedema Association please visit HAEA.org

In this episode, BioMarin’s Clinical Science Lead, Jack Brownrigg, and HAE physician, Dr. Timothy Craig, discuss AAV Gene Therapy and BioMarin’s investigational clinical trial for HAE.

For more information about Hereditary Angioedema please visit HAEA.org

This episode is brought to you by our sponsor: BioMarin Pharmaceutical Inc.

The Hereditary Angioedema Association continues to be the galvanizing force advocating and supporting the HAE community.  In this episode, the HAEA staff provides a review of 2021 programs and accomplishments.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Ionis Pharmaceuticals

Takeda

Stephanie speaks with Missy about her HAE journey during her pregnancies.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsor

Ionis Pharmaceuticals

Episode 4 - Mandy is a mother and caregiver to her son, Luke.   Listen as Mandy shares a part of their journey,  life before and after an HAE diagnosis of a child.

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:

⁠⁠BioCryst Pharmaceuticals⁠⁠

⁠⁠Kalvista Pharmaceuticals⁠⁠

⁠⁠Takeda⁠

As you may already know, the HAEA has adapted to the uncertainty provoked by the COVID-19 pandemic by swiftly transitioning our 2020 scheduled programs and events to fun and engaging virtual platforms.  In just a few months, we have successfully developed and launched interactive contests, advocacy training modules, virtual Meet & Greet events, and more to fulfill the needs of the HAEA community. We have also increased the number of webinars and their content. Listen as HAEA staff discuss how together, we have adapted to this virtual world.

In this episode Bobbi shares her journey with HAE as a person diagnosed with HAE, turning into also a caregiver, and how her and her girls are living a great life with HAE.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

BioMarin

CSL Behring

Takeda

In this episode of the HAE speaks podcast Antonio and Jack talk about their DIY event. They discuss how the idea started and their game plan to make the event a success.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Ionis Pharmaceuticals

Takeda

A brief overview of HAE and the Hereditary Angioedema Association.

In this episode of the HAE Speaks podcast, the HAEA staff talks about their accomplishments in 2022. Listen now to hear what resources are available!

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

BioMarin

CSL Behring

Takeda

Bobbi shares her story of living with HAE and describes how the  evolution of treatments has vastly improved over the years.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

BioMarin

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:

⁠BioCryst Pharmaceuticals⁠

⁠Kalvista Pharmaceuticals⁠

⁠Takeda

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!

Lisa and Mike tell us about the 2022 HAE day :-) campaign. Register now at HAEA.org.  For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

BioMarin

Takeda

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.

A message from our Sponsor: BioCryst Pharmaceuticals:

In this episode of the HAE Speaks podcast, we listen to Red share his experience with HAE and preventing attacks with ORLADEYO® (berotralstat), the once daily oral treatment.

For more information on ORLADEYO, including the full prescribing and important safety information, visit www.ORLADEYO.com.

For more information about Hereditary Angioedema please visit HAEA.org

Jenny talks about how she handles having HAE and putting herself first when she is not having the best of days. Jenny is a huge advocate of self care, especially as a person living with a rare disease.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Ionis Pharmaceuticals

Takeda

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 episode Christine and Mike discuss the US HAEA Virtual Capitol Hill Campaign and the importance of advocating for the HAE.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Ionis Pharmaceuticals

Takeda

Episode 39: Adina Mauk:HAEA Health Advocate, shares the importance of mindfulness  along with tips and tricks. 

Looking for ideas and methods for self-care? Adina has just the information you are looking for.  In this episode of the HAE Speaks podcast Adina talks about her journey to self-care.

Living with HAE can be stressful both for someone living with HAE as well as for caregivers.  Mindfulness can help you focus on what you are sensing and feeling in the moment and be used as a tool for effectively managing this stress.

For more information about Hereditary Angioedema please visit ⁠HAEA.org⁠

Thank you to our sponsors:

⁠BioCryst Pharmaceuticals⁠

⁠Kalvista Pharmaceuticals⁠

⁠Takeda

The 2022 HAE IN-MOTION® - Step it up for HAE virtual challenge registration is open.  In this episode, hear tips, tricks, and advice from a past participant. Register now at HAEA.org.  For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

BioMarin

Takeda

Episode 37: In this episode of the HAE Speaks podcast Missy talks with Bobbi and Mike about their journey of living with HAE and also the transition of becoming caregivers for their children diagnosed with HAE. 

For more information about Hereditary Angioedema please visit ⁠HAEA.org⁠

Thank you to our sponsors:

⁠BioCryst Pharmaceuticals⁠

⁠Kalvista Pharmaceuticals⁠

⁠Takeda

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!

In this episode of the HAE Speaks podcast, we listen to Abby share her experience and excitement about being a part of the HAEA Brady club.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

BioMarin

CSL Behring

Takeda

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!

In this episode of the HAE Speaks podcast we hear from HAEA staff member Adina.  Adina shares her HAE journey from diagnosis to today.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

BioMarin

CSL Behring

Takeda

Episode 35: Lora shares her HAE journey as well as how she spreads HAE awareness nationwide.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Kalvista Pharmaceuticals

Takeda

In this episode of HAE Speaks we connect with Marna and Adina to learn more about the HAEA Support Groups.

Linda P. provides insight to her HAE journey and tips about creating HAE awareness.

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:

⁠BioCryst Pharmaceuticals⁠

⁠Kalvista Pharmaceuticals⁠

⁠Takeda

In this episode of the HAE Speaks podcast, Jess talks about the importance of advocacy and how you can get involved.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

BioMarin

CSL Behring

Takeda

In this episode, Missy, Marti and Marna talk about speaking with your children’s school and teachers of their HAE diagnosis. As mothers of children with HAE, they emphasize the importance of  keeping the school up to date about HAE.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Ionis Pharmaceuticals

Takeda

Tony Castaldo, CEO of the HAE Association provides an information packed update on the new HAE treatments that are being developed by 9 companies. Tune in to this  podcast for the latest exciting details about this vitally important HAE research.

Here is a list of companies and their websites listed in order as they are discussed in the podcast.

BioCryst: www.biocryst.com

Kalvista: www.kalvista.com

Phavaris: pharvaris.com

Attune Pharmaceuticals: attunepharma.com

CSL Behring: www.cslbehring.com

BioMarin: www.biomarin.com

RegenxBio: www.regenxbio.com

Intellia Therapeutics: www.intelliatx.com

Ionis Pharmaceuticals: www.ionispharma.com

In this episode of the HAE Speaks podcast, Troyce provides tips about going back to school while having HAE. Troyce provides insight at each level of school, beginning with kindergarten and all the way through college, attending school while at home and also away from home.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

BioMarin

CSL Behring

Takeda

In this episode of HAE Speaks podcast Sonia discusses her journey with HAE and how much life has changed since diagnosis.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Ionis Pharmaceuticals

Takeda

Kayla, an individual with HAE, shares her perspective on being recently diagnosed with HAE, advocating for herself, and her journey to a diagnosis.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Kalvista Pharmaceuticals

Takeda

Hannah C., an HAE patient, and HAEA team member, talks about her HAE journey, including growing up with an HAE diagnosis, attending school, and overall life while having HAE.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Ionis Pharmaceuticals

Takeda

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

⁠⁠⁠Kalvista Pharmaceuticals⁠⁠⁠

⁠⁠⁠Takeda⁠

Lisa talks about the HAE IN-MOTION® Event that she and her family participate in.  Enjoying walks together as a family, and entering in the weekly photo contest.  Also, Lisa talks about promoting the event on Facebook.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Ionis Pharmaceuticals

Takeda

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!

Troyce, an HAEA Health team member, provides information and tips about insurance in 2022.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

BioMarin

Takeda

Michael G. shares his road to treatment and overcoming his fear of needles.

In this episode, Mike and Missy discuss HAEA Meet and Greet events, and answer some important questions.  What is an HAEA Meet and Greet?  Who should attend?  Why should you attend? 

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Chaeli discusses traveling with HAE. She talks about how she prepares to travel by car and plane.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Ionis Pharmaceuticals

Takeda

Episode 36: Dr. Riedl discusses the HAEA shared decision making tool. A free tool available at HAEA.org to help individuals living with HAE prepare for their physician appointments.

Dr. Riedl:

Allergist/Immunologist

Clinical Director of UC San Diego Health's U.S. HAEA Angioedema Center

Professor of Medicine

For more information about Hereditary Angioedema please visit ⁠HAEA.org⁠

Thank you to our sponsors:

⁠BioCryst Pharmaceuticals⁠

⁠Kalvista Pharmaceuticals⁠

⁠Takeda

Episode 12 is hosted by Jess, an HAE patient and HAEA team member. She talks about her journey through diagnosis, her experience traveling abroad, and what she would tell her younger self when she was first diagnosed with HAE.

For more information about Hereditary Angioedema please visit HAEA.org

Thank you to our sponsors:

BioCryst Pharmaceuticals

Ionis Pharmaceuticals

Takeda