Just Listen: Voices of PK Deficiency Podcast
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.
Episodes
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 an...
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, car...
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...
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...
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 inten...
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 Pyruvat...
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 an...
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,...
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 in...
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 Defi...
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 tre...
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://w...
On this episode, Dr. Rachel 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 jou...
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
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 patient...
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: ...
On this episode, Dr. Rachel 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 jou...
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 “W...
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 intend...
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 ...
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