Just Listen: Voices of PK Deficiency Podcast

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...

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 impac...

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 greate...

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...

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". 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 intended for patients, caregivers, provide...

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 t...

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 intende...

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 comm...

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...

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, Jus...

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, caregi...