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.

For more information on the International Guidelines for the Diagnosis & Management of Pyruvate Kinase Deficiency: https://pkdguidelines.org/

For more information on the Thrive with Pyruvate Kinase Deficiency organization, visit: https://thrivewithpkd.org/

For more information on the Pyruvate Kinase Deficiency Foundation, visit: https://www.pkdf.org/

SHOW DESCRIPTION

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.

TRANSPARENCY STATEMENT

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.

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.

SHOW DESCRIPTION

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.

TRANSPARENCY STATEMENT

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.

Join Dr. Rachael Grace as she interviews Dr. Eduard van Beers, a leading expert in rare anemia including Pyruvate Kinase (PK) deficiency. They discuss the clinical challenges, benefits, and complications associated with transfusions for PK deficiency, underscoring the importance of personalized care and international collaboration for optimizing patient outcomes.

For more information on the International Guidelines for the Diagnosis & Management of Pyruvate Kinase Deficiency: https://pkdguidelines.org/

SHOW DESCRIPTION

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.

Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram.

TRANSPARENCY STATEMENT

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 and guest were paid to participate in this podcast.