Podcasts by HAE Speaks
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.
Further podcasts by US HAEA
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Episode 44: A word from the HAE Community from 2023-11-30T15:50:08
2023 was a busy year for the HAE community. Listen in as community members share their highlights of 2023.
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Episode 43: Kate is living Beyond HAE from 2023-11-01T04:01
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.
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Episode 42: Dusty & Mark’s HAE Journey from 2023-10-01T04:01
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 sha...
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Episode 41: Back to School tips with Mandy from 2023-09-01T04:01
HAE Speaks Podcast - Episode 41: Back to School tips with Mandy
Amanda Grant, HAE Health Advocate shares advice to help you b...
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Episode 40: College preparedness & HAE from 2023-08-01T11:00
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 impo...
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Episode 39: The importance of mindfulness from 2023-07-05T15:02
Episode 39: Adina Mauk:HAEA Health Advocate, shares the importance of mindfulness along with tips and tricks.
Looking for ideas and methods for s...
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Episode 38: Hosting an HAE DIY event from 2023-06-01T16:17:07
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 ...
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Episode 37: Transitioning to Caregiver from 2023-05-15T20:24:09
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 t...
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Episode 36: Dr. Riedl discusses the HAEA shared decision making tool. from 2023-04-06T18:04:22
Episode 36: Dr. Riedl discusses the HAEA shared decision making tool. A ...
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Episode 34: Lora's HAE Journey from 2023-03-13T19:39:44
Episode 35: Lora shares her HAE journey as well as how she spreads HAE awareness nationwide.
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Episode 32: Navigating college with HAE from 2023-03-09T22:00:20
In this episode, Kelsie talks about her HAE journey and navigating college with HAE.
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Gene Therapy in HAE: A look into BioMarin’s Investigational Study from 2023-02-06T16:52:59
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.
Episode 34: A Newly Diagnosed Perspective from 2023-01-31T18:16:09
Kayla, an individual with HAE, shares her perspective on being recently diagnosed with HAE, advocating for herself, and her journey to a diagnosis.
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Episode 32: HAEA year in review from 2023-01-09T16:56:23
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!
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Episode 31- Jess shares the importance of Advocating for HAE from 2022-11-01T04:01:42
In this episode of the HAE Speaks podcast, Jess talks about the importance of advocacy and how you can get involved.
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Episode 30- Adina's HAE journey from 2022-10-06T07:15:03
In this episode of the HAE Speaks podcast we hear from HAEA staff member Adina. Adina shares her HAE journey from diagnosis to today.
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Episode 29- Bobbi shares her journey with HAE from 2022-09-07T22:13:07
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.
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Orladeyo: Red shares his HAE journey from 2022-08-23T13:32:27
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® (bero...
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Episode 28- Troyce provides tips about going back to school from 2022-08-01T13:45:19
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 ...
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Episode 27- Abby shares her insights about the HAEA Brady Club from 2022-07-01T20:04:45
In this episode of the HAE Speaks podcast, we listen to Abby share her experience and excitement about being a part of the HAEA...
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Episode 26- Missy & Sarah discuss the 2022 HAE IN-MOTION® from 2022-05-31T21:17:27
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 Listen
Episode 25- Lisa & Mike share information about HAE day :-) 2022 from 2022-05-05T18:06:26
Lisa and Mike tell us about the 2022 HAE day :-) campaign. Register now at HAEA.org. For more information about Heredi...
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Episode 24- Aysha shares her HAE journey from 2022-04-01T15:40:39
Aysha shares her story of living with HAE and describes her journey of finding a diagnosis.
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Episode 23- Troyce provides tips about insurance in 2022 from 2022-02-28T18:58:34
Troyce, an HAEA Health team member, provides information and tips about insurance in 2022.
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Episode 20- HAEA Year in Review from 2022-01-28T16:20:36
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 ...
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Episode 22- Bobbi shares her HAE journey from 2022-01-28T16:12:19
Bobbi shares her story of living with HAE and describes how the evolution of treatments has vastly improved over the years.
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Episode 21- HAEA Meet and Greet Events from 2022-01-03T15:39:59
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 atten...
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Episode 19- Jenny's HAE Journey from 2021-10-27T17:14:05
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 d...
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Episode 18- Christine and Mike: Capitol Hill Campaign from 2021-10-04T14:02
In this episode Christine and Mike discuss the US HAEA Virtual Capitol Hill Campaign and the importance of advocating for the HAE.
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Episode 17- Antonio and Jack: HAEA DIY events from 2021-08-30T20:48:18
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.
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Episode 16: Sonia's HAE Journey from 2021-07-30T18:21:03
In this episode of HAE Speaks podcast Sonia discusses her journey with HAE and how much life has changed since diagnosis.
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Episode 15: Lisa: HAE IN-MOTION® from 2021-06-30T16:25:46
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...
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Episode 14: Chaeli: HAE and Travel from 2021-05-28T15:36:24
Chaeli discusses traveling with HAE. She talks about how she prepares to travel by car and plane.
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Episode 13: Lisa: HAE events from 2021-05-04T13:24:05
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.
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Episode 12: Jess's HAE Journey from 2021-04-06T16:46:24
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 sel...
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Episode 11: HAE and Education from 2021-03-01T15:12:22
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 importanc...
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Episode 10: Hannah's HAE Journey from 2021-02-01T21:30:06
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. Listen
Episode 9: HAE and pregnancy from 2021-01-04T22:10:26
Stephanie speaks with Missy about her HAE journey during her pregnancies.
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Episode 8: 2020 Team HAEA from 2020-11-29T02:21:11
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 vir...
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Episode 7: HAEA Support from 2020-11-02T14:11:43
In this episode of HAE Speaks we connect with Marna and Adina to learn more about the HAEA Support Groups.
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Episode 6: Advocating for HAE from 2020-09-21T19:17:33
Linda P. provides insight to her HAE journey and tips about creating HAE awareness.
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Episode 5: Road to Treatment from 2020-08-21T19:32:10
Michael G. shares his road to treatment and overcoming his fear of needles.
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Episode 4: Life before and after an HAE diagnosis of a child. from 2020-08-03T15:58:09
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.
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Episode 3: Ongoing Research for New HAE treatments. from 2020-07-03T18:34:05
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 l...
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Episode 2: COVID interviews from 2020-06-02T17:11:19
Missy interviews an HAE patient, caregiver and two Brady Club youngsters about COVID. Each of them with great ideas and tips during this time.
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Episode 1: Life as a Caregiver (Missy M.) from 2020-05-01T16:44:39
Episode 1
HAE Speaks Podcast:
Missy M. shares a glimpse into her life as an HAE caregiver for her husband Mike.
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What is HAE? from 2020-05-01T16:34:20
A brief overview of HAE and the Hereditary Angioedema Association.
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