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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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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 4, 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 6, 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 1, 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 1, 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 4, 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 2, 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 3, 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 3, 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 2, 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 1, 2020
What is HAE?
A brief overview of HAE and the Hereditary Angioedema Association.
02:28
May 1, 2020