Just Listen: Voices of PK Deficiency Podcast

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.   SHOW DESCRIPTION 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 RethinkThalassemia.com. Join an inclusive community and build connections with other hemolytic anemia allies by following @AllyVoicesRising on Instagram. Thal Pals 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.    TRANSPARENCY STATEMENT  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.

On this episode of 'Just Listen, Voices of PK Deficiency,' host Dr. Rachael 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.  

On this episode of Just Listen: Voices of PK Deficiency, host Dr. Rachael Grace interviews Dr. Andreas Glenthøj, a hematologist from Copenhagen University Hospital, about his journey into genetic red blood cell disorders and the latest international guidelines for managing PK deficiency. They discuss various complications like iron overload, bone density issues, and pulmonary hypertension, along with the importance of proactive screening to improve 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.  

On this episode, guest host Janie Davis, Director of Patient Advocacy at Agios Pharmaceuticals, discusses the Life Stage Model initiative with patient advocacy leaders, Tamara Scriver and Alejandra Watson. They delve into the work of the PKD Advocacy Advisory Council (AAC) and how it addresses the unmet needs of the community. The conversation highlights the development of the Life Stage Model, which categorizes the physical and psychosocial symptoms of PKD across different life stages.    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. Guests Tamara Schryver and Alejandra Watson have been compensated for their time.   

On this episode of Just Listen: Voices of PK Deficiency, guest host Janie Davis (Director, Patient Advocacy at Agios) is joined by special guests Tamara Schryver, Jill Welle, and Alejandra Watson to discuss the impact and organization of the second international PKD Conference. They share their experiences, the importance of international collaboration, and key moments from the event that empowered the PKD community through advocacy, education, and personal connections. The guests also reveal future plans, including a merge of PKD organizations to form the Pyruvate Kinase Deficiency International Alliance, aiming to expand global outreach and support.   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. Guests, Jill Welle, Tamara Schryver, and Alejandra Watson have been compensated for their time.   

his episode, Dr. Rachael Grace welcomes back Tamara Schryver, PhD, RD, President of Thrive with PK deficiency, to discuss the essential role of nutrition and physical activity for individuals with PK deficiency. They explore the importance of iron management, vitamin intake, and tailored dietary plans developed by registered dietitians. Dr. Schryver offers insights into working with picky eaters and integrating physical activity to ensure overall health and bone density. This informative conversation emphasizes the value of a team approach, including hematologists and dietitians, for managing PK deficiency.   For more information about nutrition and PK deficiency, click here.   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 guest, Tamara Schryver have been compensated for their time.   

On this episode, host Dr. Rachael Grace interviews Dr. Satheesh Chonat, a pediatric hematologist and expert in red cell disorders. They discuss Dr. Chonat's career path and focus on the complexities of managing anemia in patients with pyruvate kinase deficiency, emphasizing the role of the spleen. They explore why splenectomy might be considered, potential risks and benefits, and the importance of individualized patient care. They also cover post-splenectomy considerations such as infection risks, the possibility of needing lifelong vaccinations, and the management of complications.    For more information on 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.   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 guest, Dr. Satheesh Chonat have been compensated for their time.   

On this episode of 'Just Listen, Voices of PK Deficiency,' host Dr. Rachael 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 talks with the King family. Jennifer and Jerry King have been raising William and Lily. Both have pyruvate kinase deficiency and we discuss how they've managed the disease with their two children..   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, the King family, have been compensated for their time.  

On this episode, Dr. Rachael Grace talks with Jessica Kellar and her teenage son Travis. They discuss Travis' diagnosis, actively involving him in his own care and how to navigate life as a teenager with pyruvate kinase deficiency.   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 Jessica Kellar and Travis Kellar have been compensated for their time.   

What does it mean when a parent has pyruvate kinase deficiency? On today's episode we welcome back Nathan Thompson, a father with PK Deficiency. He has two daughters. He's joined today by his daughter Zoe. Here, we learn about parenting with PKD and all of the challenges associated with it.   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 has been compensated for her time.  

On this episode, Dr. Rachael Grace is in conversation with Carl Lander, Chair of the Steering Committee for the Peak Registry and International Collaboration Director of Thrive with Pyruvate Kinase Deficiency. Here they discuss the latest with the Peak Registry. 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 guest Carl Lander have been compensated for their time. The Peak Registry is a global longitudinal study of patients diagnosed with pyruvate kinase deficiency sponsored by Agios Pharmaceuticals, Inc.

On this episode, Dr. Rachael Grace is in conversation with Claire Egan, Senior Genetic Counselor with InformedDNA, to talk all about genetics.   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 guest Claire Egan have been compensated for their time.  

Dr. Rachael Grace returns with patient advocate (and PK Deficiency TikTok influencer) Karla Chichester. On this episode, Dr. Grace and Karla dispel some of the biggest myths surrounding Pyruvate Kinase Deficiency. Originally aired on September 29, 2022. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency (PK 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. Guest Host, Dr. Rachel Grace and Karla Chichester 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 his time.  

Our guest today is Dolores Dumas. Dolores is a 73-year-old living with PK deficiency, and was diagnosed as a teen with nonspherocytic hemolytic anemia. During a visit with a new hematologist, she received a definitive diagnosis of PK deficiency. Dolores feels grateful that she finally has a name for her condition. 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 Dolores Dumas have been compensated for her time.

What does it mean when a parent has pyruvate kinase deficiency? On today's episode we welcome back Nathan Thompson, a father with PK Deficiency. He has two daughters. He's joined today by his daughter Zoe. Here, we learn about parenting with PKD and all of the challenges associated with it.   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 has been compensated for her time.  

On today's episode, we travel to New Orleans for a discussion about aging with pyruvate kinase deficiency (PKD) with returning guests Jill Welle and Tamara Schryver. Janie Davis, Associate Director Patient Advocacy at Agios Pharmaceuticals, leads the conversation.   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 Matthew Heeney have been compensated for their time.  

On this episode, we interview Alejandra Watson and Laura Miller D'Angelo of Pyruvate Kinase Deficiency Foundation. We learn more about the organization as well as Alejandra's experience as a caregiver for a child with PKD as well as Laura's experience living with PKD.   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about pyruvate kinase deficiency (PK 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's on Facebook: bit.ly/KnowPKD.   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 featured in this episode have been compensated for their time.  

On today's episode, your host, Dr. Rachael Grace is in conversation with Dr. Matthew Heeney. Dr. Heeney's research is focused on the management of patients with sickle cell disease and rare iron disorders. Today's podcast is focused on understanding clinical trials, particularly for rare disorders.    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 Matthew Heeney have been compensated for their time.  

We're LIVE from New Orleans, Louisiana! Listen to our live podcast panel featuring members of the sickle cell, pyruvate kinase deficiency, and thalassemia communities and leading KOL's in each field. We are proud to introduce the Red Cell Revolution! The Red Cell Revolution is an Agios patient advocacy movement that is driven by a relentless desire to find common ground with these communities and their treaters. 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, Kevin Kuo, Laurice Levine, Mike Callaghan, Cassandra Trimnell, Teonna Woolford, NinaMaria Badalamenti, Clarisse Lobo, Jill Welle, Tamara Schryver, Rae Blaylark, Ralph Colasanti, Rucha Shah, Alejandra Watson, Biree Andemariam, Charles Jonassaint, Sujit Sheth, Nirmish Shah have been compensated for their time.  

Dr. Rachael Grace welcomes back Alejandra Watson of the Pyruvate Kinase Deficiency Foundation as well as her son Jonathan to discuss transitioning from childhood to adulthood. We'll learn about how Jonathan took over some responsibility of his care as he grew older and went off to college.   Learn more about the Pyruvate Kinase Deficiency Foundation at 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 Dr. Rachel Grace, Alejandra Watson and Jonathan Watson have been compensated for their time.

On this episode, Dr. Rachael Grace, a pediatric hematologist, clinical researcher at the Dana-Farber/Boston Children's Cancer and Blood Disorders Center and previous guest on the podcast fills in as guest host. She interviews Dr. David Nathan, a pioneer in the field of hematology and pyruvate kinase deficiency. She also interviews Jill Welle, a patient and previous guest on the show to discuss her journey with PKD.  Originally aired on July 20th, 2022.   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency (PK 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 and guests featured in this episode have been compensated for their time.   Produced by BloodStream Media

Dr. Rachael Grace talks to Becky Herzog, mother of Remy about caring for a small child with pyruvate kinase deficiency. On this episode of our PKD Caregiver Series, we'll talk about the challenges and lessons learned from parenting a child with this rare disease. Dr. Grace also gave some insight into why she became a pediatric hematologist.  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, Dr. Rachel Grace and Becky Herzog have been compensated for their time.

Dr. Rachael Grace and patient advocate (and PKD TikTok influencer) Karla Chichester are back to bust more myths about PKD! This is part two of our MythBusters: PKD Edition series.   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency (PK 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. Guest Host, Dr. Rachel Grace and Karla Chichester have  been compensated for their time.

Dr. Rachael Grace returns with patient advocate (and PK Deficiency TikTok influencer) Karla Chichester. On this episode, Dr. Grace and Karla dispel some of the biggest myths surrounding Pyruvate Kinase Deficiency.    SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency (PK 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. Guest Host, Dr. Rachel Grace and Karla Chichester been compensated for their time.

On this episode, Dr. Rachael Grace, a pediatric hematologist, clinical researcher at the Dana-Farber/Boston Children's Cancer and Blood Disorders Center and previous guest on the podcast fills in as guest host. She interviews Dr. David Nathan, a pioneer in the field of hematology and pyruvate kinase deficiency. She also interviews Jill Welle, a patient and previous guest on the show to discuss her journey with PKD.   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency (PK 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 and guests featured in this episode have been compensated for their time.   Produced by BloodStream Media

Today we're talking to two rare disease patients who are accomplished advocates. We will hear their ups and downs with self advocacy and the steps they include when crafting their stories whether in a clinician's office or their professional lives.  We hear from Bianca Basset who lives with PKD, is a disability consultant from Australia and author of the book "Walking My Path…Building Memories". We also hear from  Patrick James Lynch, a filmmaker and a patient advocate who lives with severe hemophilia A. He is the co-founder and CEO of Believe Limited, a content agency that produces entertainment to affect change.  Patrick and Bianca are both professional storytellers. We'll hear the unique ways both of them craft their stories over the years.   World Blood Donation Day is June 14, 2022. Please donate if you can.   Connect with Patrick James Lynch: LinkedIn BloodStream Podcast Global Hemophilia Report   Connect with Bianca Bassett : Website Instagram   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about Pyruvate Kinase Deficiency (PK 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 and guests featured in this episode have been compensated for their time.   Produced by BloodStream Media

On this episode, we reconnect with Dr. Rachael Grace to discuss how to empower patients to share the impact of their PK deficiency on their life. We also learn from patients John and Morgan about their experiences with this disease.   SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about pyruvate kinase deficiency (PK 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's on Facebook: bit.ly/KnowPKD.   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 guests featured in this episode have been compensated for their time.  Produced by BloodStream Media Special thanks to our participants: Dr. Rachael Grace John Schork Morgan Kate Vincent

On this episode, we discuss the Pyruvate Kinase Deficiency Advocacy Advisory Council, (AAC), an international, multi-disciplinary group of experts including patients, caregivers, patient advocates and clinicians. The AAC launched a survey, which received 275 respondents from 11 countries, making it the largest of its kind for this community which resulted in a White Paper. The White Paper shares the results of the international survey exploring communication between PK deficiency patients and caregivers and their hematologists. Agios funds and supports the AAC. We speak with AAC member, Dr. Rachael Grace, a pediatric hematologist and a clinical researcher at the Boston Children's Cancer and Blood Disorders Center about the AAC and the White Paper. We also hear from former guests Tamara Schryver and Carl Lander of Thrive with PK Deficiency Patient Organization (thrivewithpkd.org) as well as Alejandra Watson and Laura Miller-D'Angelo of the Pyruvate Kinase Deficiency Foundation (pkdf.org) who are also AAC members. To read the AAC White Paper, Pyruvate Kinase Deficiency: Reflections on the Patient Experience to Support Treatment and Care white paper go to: https://thalassaemia.org.cy/pk-deficiency/.  SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about pyruvate kinase deficiency (PK 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's on Facebook: bit.ly/KnowPKD.   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 guests featured in this episode have been compensated for their time.  Produced by BloodStream Media

On this episode, we interview Alejandra Watson and Laura Miller D'Angelo of Pyruvate Kinase Deficiency Foundation. We learn more about the organization as well as Alejandra's experience as a caregiver for a child with PKD as well as Laura's experience living with PKD. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about pyruvate kinase deficiency (PK 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's on Facebook: bit.ly/KnowPKD. 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 featured in this episode have been compensated for their time.

On this episode, we interview Tamara Schryver and Carl Lander of Thrive with Pyruvate Kinase Deficiency Patient Organization. We learn more about Thrive as well as Tamara and Carl's experiences living with PKD. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about pyruvate kinase deficiency (PK 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's on Facebook: bit.ly/KnowPKD. 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 guests featured in this episode have been compensated for their time.  Produced by BloodStream Media

Jill Welle, community advocate and PKD patient interviews Agios Chief Medical Officer Dr. Sarah Gheuens to learn more about how Agios has connected with the PKD community on clinical trial development. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about pyruvate kinase deficiency (PK 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's on Facebook: bit.ly/KnowPKD. 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 featured in this episode has been compensated for their time.

Hosts Dr. Ahmar Zaidi and Dr. Mike Callaghan introduce PK Deficiency patients Jill Welle and Nathan Thompson. Hear their stories about living with PKD. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about pyruvate kinase deficiency (PK 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's on Facebook: bit.ly/KnowPKD. 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 guests featured in this episode have been compensated for their time.

Hear an excerpt with Dr. Ahmar Zaidi and Dr. Mike Callaghan as they speak with Jill Welle, who has lived with PK Deficiency for 60 years and Janie Davis, Associate Director Patient Advocacy at Agios about how is Agios approaching patient advocacy. SHOW DESCRIPTION Just Listen: Voices of PK Deficiency is a podcast about pyruvate kinase deficiency (PK 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's on Facebook: bit.ly/KnowPKD. 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 guests featured in this episode have been compensated for their time.