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HAE Speaks

HAE Speaks

By US HAEA
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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Spotify

Episode 30- Adina's HAE journey
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
17:19
October 06, 2022
Episode 29- Bobbi shares her journey with HAE
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
15:29
September 07, 2022
Orladeyo: Red shares his HAE journey
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
11:47
August 23, 2022
Episode 28- Troyce provides tips about going back to school
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
09:38
August 01, 2022
Episode 27- Abby shares her insights about the HAEA Brady Club
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
08:27
July 01, 2022
Episode 26- Missy & Sarah discuss the 2022 HAE IN-MOTION®
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
12:24
May 31, 2022
Episode 25- Lisa & Mike share information about HAE day :-) 2022
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
19:26
May 05, 2022
Episode 24- Aysha shares her HAE journey
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
25:43
April 01, 2022
Episode 23- Troyce provides tips about insurance in 2022
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
06:23
February 28, 2022
Episode 20- HAEA Year in Review
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
26:07
January 28, 2022
Episode 22- Bobbi shares her HAE journey
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
06:23
January 28, 2022
Episode 21- HAEA Meet and Greet Events
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
07:34
January 03, 2022
Episode 19- Jenny's HAE Journey
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
35:17
October 27, 2021
Episode 18- Christine and Mike: Capitol Hill Campaign
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
17:55
October 04, 2021
Episode 17- Antonio and Jack: HAEA DIY events
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
09:09
August 30, 2021
Episode 16: Sonia's HAE Journey
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
15:18
July 30, 2021
Episode 15: Lisa: HAE IN-MOTION®
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
11:07
June 30, 2021
Episode 14: Chaeli: HAE and Travel
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
12:30
May 28, 2021
Episode 13: Lisa: HAE events
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
19:00
May 04, 2021
Episode 12: Jess's HAE Journey
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
25:08
April 06, 2021
Episode 11: HAE and Education
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
25:08
March 01, 2021
Episode 10: Hannah's HAE Journey
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
09:16
February 01, 2021
Episode 9: HAE and pregnancy
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
06:52
January 04, 2021
Episode 8: 2020 Team HAEA
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.
27:08
November 29, 2020
Episode 7: HAEA Support
In this episode of HAE Speaks we connect with Marna and Adina to learn more about the HAEA Support Groups.
12:11
November 02, 2020
Episode 6: Advocating for HAE
Linda P. provides insight to her HAE journey and tips about creating HAE awareness.
07:55
September 21, 2020
Episode 5: Road to Treatment
Michael G. shares his road to treatment and overcoming his fear of needles.
12:27
August 21, 2020
Episode 4: Life before and after an HAE diagnosis of a child.
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.
16:23
August 03, 2020
Episode 3: Ongoing Research for New HAE treatments.
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
13:30
July 03, 2020
Episode 2: COVID interviews
Missy interviews an HAE patient, caregiver and two Brady Club youngsters about COVID. Each of them with great ideas and tips during this time.
27:47
June 02, 2020
Episode 1: Life as a Caregiver (Missy M.)
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
15:11
May 01, 2020
What is HAE?
A brief overview of HAE and the Hereditary Angioedema Association.
02:28
May 01, 2020