HAE Speaks

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: ⁠BioCr...

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.  Mindfulne...

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  ⁠HAE...

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

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...

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, 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

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.

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

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

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 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

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

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 Angioede...

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 Bi...

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

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

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

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

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

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

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

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

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

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