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Just Listen: Voices of PK Deficiency Podcast

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by BloodStream Media

5.0(13 reviews)
39 episodes
Updated Bi-weekly
Accepts GuestsHas SponsorsLocation 🇺🇸
31

Podcast Authority

Beta
PoorBased on show quality, social media presence, reviews, charts, and more
Pod Engine
Quality33
Social0
YouTube0
Engagement71
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Podcast Overview

Just Listen: Voices of PK Deficiency is a podcast about PK deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PK deficiency. Each episode of the Just Listen podcast strives to provide listeners with critical education, the latest scientific updates, and voices from the PK deficiency community. Learn more about PK deficiency by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Just Listen: Voices of PK Deficiency is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.

Language

🇺🇲

Publishing Since

11/16/2021

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31

Podcast Authority

Beta
PoorBased on show quality, social media presence, reviews, charts, and more
Pod Engine
Quality33
Social0
YouTube0
Engagement71
Learn more
6
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2
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11
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excellent
Episode Length
26 minutes
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good
Show Notes Quality
3.0/5

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Every 40 days

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Recent Episodes

Episode thumbnail for Learnings from the Red Cell Revolution

February 28, 2026

Learnings from the Red Cell Revolution

<p dir="ltr">This special crossover episode brings together advocates from PK deficiency, thalassemia, and sickle cell disease to share insights from the Red Cell Revolution and the powerful connections formed across rare hemolytic anemias. NinaMaria Badalamenti leads a heartfelt conversation with Jill Welle, Laurice Levine, and Cassandra Trimnell about the common challenges these communities face, from fatigue to stigma to navigating complex care. Together, they explore how collaboration, shared education, and collective advocacy strengthen each individual movement. The episode offers hope, perspective, and a reminder that these rare-disease communities are stronger together.</p> <p><strong> </strong></p> <p dir="ltr">SHOW DESCRIPTION</p> <p dir="ltr">Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and the greater community of people who are impacted by thalassemia. Each episode strives to provide listeners with critical education, the latest scientific updates, and voices from the thalassemia community. Learn more about thalassemia by visiting <a href= "https://www.rethinkthalassemia.com/">RethinkThalassemia.com</a>. Join an inclusive community and build connections with other hemolytic anemia allies by following <a href= "https://www.instagram.com/allyvoicesrising/">@AllyVoicesRising</a> on Instagram. Thal Pals is sponsored by Agios Pharmaceuticals Inc. Visit <a href="http://agios.com/">Agios.com</a> to learn more.</p> <p><strong> </strong></p> <p dir="ltr">This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. </p> <p><strong> </strong></p> <p dir="ltr">TRANSPARENCY STATEMENT </p> <p>Thal Pals: The Alpha Beta Revolution Podcast is made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host and guests featured in this episode have been compensated for their time.</p>

Episode thumbnail for Replay: PKD International Guidelines

December 1, 2025

Replay: PKD International Guidelines

<p dir="ltr">On this episode of 'Just Listen, Voices of PK Deficiency,' host Dr. Rachel Grace is joined by patient advocate leaders Tamara Schryver of Thrive with PKD and Alejandra Watson of the PKD Foundation  to discuss the newly available international guidelines for diagnosing and managing pyruvate kinase deficiency (PKD). The discussion highlights the importance of these guidelines in providing standardized care, especially in regions lacking specialized hematologists, and the role of patient and caregiver perspectives in their development. Topics covered include the challenges of managing PKD without guidelines, the comprehensive approach taken to create the new guidelines, and the impact of these guidelines on the global PKD community. The episode emphasizes the significance of individualized care, shared decision-making, and the critical need for mental health support for PKD patients and their families.</p> <p><strong> </strong></p> <p dir="ltr">For more information on the International Guidelines for the Diagnosis & Management of Pyruvate Kinase Deficiency: <a href= "https://pkdguidelines.org/">https://pkdguidelines.org/</a></p> <p><strong> </strong></p> <p dir="ltr">For more information on the Thrive with Pyruvate Kinase Deficiency organization, visit: <a href= "https://thrivewithpkd.org/">https://thrivewithpkd.org/</a></p> <p><strong> </strong></p> <p dir="ltr">For more information on the Pyruvate Kinase Deficiency Foundation, visit: <a href= "https://www.pkdf.org/">https://www.pkdf.org/</a></p> <p><strong> </strong></p> <p dir="ltr">SHOW DESCRIPTION</p> <p dir="ltr">Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PKD.  Each episode, Just Listen: Voices of PK Deficiency strives to provide listeners with critical education, the latest scientific updates, and voices from the PKD community.  Learn more about PKD by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD and Instagram shorturl.at/gmFT4.</p> <p><strong> </strong></p> <p dir="ltr">TRANSPARENCY STATEMENT </p> <p dir="ltr">Just Listen: Voices of PK Deficiency and KnowPKDeficiency.com are made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host Rachael Grace and guests Tamara Schryver and Alejandra Watson have been compensated for their time. </p> <p> </p>

Episode thumbnail for Replay: Iron Overload with Dr. Sujit Sheth

October 29, 2025

Replay: Iron Overload with Dr. Sujit Sheth

<p dir="ltr">On this episode, Dr. Rachael Grace is in conversation with Dr. Sujit Sheth about iron overload. You'll learn about iron overload and why it occurs in pyruvate kinase deficiency, explain the potential complications as well as the importance of managing and monitoring iron overload.</p> <p><strong> </strong></p> <p dir="ltr">SHOW DESCRIPTION</p> <p dir="ltr">Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PKD.  Each episode, Just Listen: Voices of PK Deficiency strives to provide listeners with critical education, the latest scientific updates, and voices from the PKD community.  Learn more about PKD by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD and Instagram shorturl.at/gmFT4.</p> <p><strong> </strong></p> <p dir="ltr">TRANSPARENCY STATEMENT </p> <p dir="ltr">Just Listen: Voices of PK Deficiency and KnowPKDeficiency.com are made possible by Agios Pharmaceuticals Inc. Visit Agios.com to learn more. The following Agios-supported programs are intended for informational and educational purposes only and are not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions. Host Rachel Grace and guest Dr. Sujit Shet have been compensated for her time.</p> <p> </p>

39 total episodes available

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Dr Andreas Glenthøj

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Tamara Schryver

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Jill Welle

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Alejandra Watson

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What is Just Listen: Voices of PK Deficiency Podcast?

Just Listen: Voices of PK Deficiency is a podcast about PK deficiency and is intended for patients, caregivers, providers, and the greater community of people who are impacted by PK deficiency. Each episode of the Just Listen podcast strives to provide listeners with critical education, the latest scientific updates, and voices from the PK deficiency community. Learn more about PK deficiency by visiting KnowPKDeficiency.com or connect with KnowPKDeficiency on Facebook: bit.ly/KnowPKD. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.

Just Listen: Voices of PK Deficiency is sponsored by Agios Pharmaceuticals Inc. Visit Agios.com to learn more.

This podcast is intended for informational and educational purposes only and is not intended as medical advice. Please speak with your healthcare professional before making any treatment decisions.

How often does this podcast release new episodes?

This podcast updates bi-weekly.

Where can I listen to this podcast?

This podcast is available on 10 platforms including Apple Podcasts, Spotify, and more. You can also use the RSS feed directly.

Does this podcast accept guests?

Yes, this podcast regularly features guests.

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