Najlepsze podcasty z kategorii: Pkdeficiency (2024)

1
Optimizing Nutrition for PK Deficiency: A Patient & Dietitian's Perspective 37:49

6d ago37:49

37:49

1
Understanding Splenectomy in PK Deficiency 27:34

2M ago27:34

27:34

On this episode, host Dr. Rachel 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, po…

1
PKD International Guidelines 37:30

3M ago37:30

37:30

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 impor…

1
Raising Two Children with PK Deficiency 26:53

5M ago26:53

26:53

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 f…

1
Raising & Being a Teen with PK Deficiency 32:47

6M ago32:47

32:47

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 fo…

1
Replay: My Dad Has PK Deficiency 15:35

9M ago15:35

15:35

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…

1
Peak Registry 27:02

11M ago27:02

27:02

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 Kinas…

1
Genetics in Pyruvate Kinase Deficiency 42:41

1y ago42:41

42:41

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 b…

1
REPLAY: MythBusters Part 1 - Pyruvate Kinase Deficiency Edition 24:40

1y ago24:40

24:40

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 Deficie…

1
Iron Overload with Dr. Sujit Sheth 31:39

1y ago31:39

31:39

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 a…

1
Definitive Diagnosis 15:56

1+ y ago15:56

15:56

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: Voic…

1
My Dad Has PK Deficiency 15:35

1+ y ago15:35

15:35

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…

1
Aging with Pyruvate Kinase Deficiency 15:38

1+ y ago15:38

15:38

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 Kin…

1
REPLAY: Pyruvate Kinase Deficiency Foundation 27:17

1+ y ago27:17

27:17

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…

1
Understanding Clinical Trials 27:42

1+ y ago27:42

27:42

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 Deficie…

1
LIVE in New Orleans: A Red Cell Revolution 48:33

1+ y ago48:33

48:33

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…

1
Caregiver Series: Transitioning to Adult Care 38:14

2y ago38:14

38:14

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 …

1
Replay: The History of PKD 41:48

2y ago41:48

41:48

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 pati…

1
Parents Support: A PKD Caregiver Series 27:54

2y ago27:54

27:54

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 DE…

1
MythBusters Part 2 - Pyruvate Kinase Deficiency Edition 14:35

2y ago14:35

14:35

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, a…

1
MythBusters Part 1 - Pyruvate Kinase Deficiency Edition 24:40

2y ago24:40

24:40

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 …

1
The History of PKD 41:48

2+ y ago41:48

41:48

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 pati…

1
I Walked in to My Hematologist’s Office: The Power of Storytelling 38:48

2+ y ago38:48

38:48

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 o…

1
Beyond the Numbers: The Impact of PK Deficiency 37:56

2+ y ago37:56

37:56

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) a…

1
Pyruvate Kinase Deficiency Advocacy Advisory Council (AAC) 27:08

2+ y ago27:08

27:08

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 r…

Podcasty warte posłuchania

Pkdeficiency Podcasty

Podcasty warte posłuchania

1
Just Listen: Voices of PK Deficiency Podcast

BloodStream Media

1
Optimizing Nutrition for PK Deficiency: A Patient & Dietitian's Perspective 37:49

1
Understanding Splenectomy in PK Deficiency 27:34

1
PKD International Guidelines 37:30

1
Raising Two Children with PK Deficiency 26:53

1
Raising & Being a Teen with PK Deficiency 32:47

1
Replay: My Dad Has PK Deficiency 15:35

1
Peak Registry 27:02

1
Genetics in Pyruvate Kinase Deficiency 42:41

1
REPLAY: MythBusters Part 1 - Pyruvate Kinase Deficiency Edition 24:40

1
Iron Overload with Dr. Sujit Sheth 31:39

1
Definitive Diagnosis 15:56

1
My Dad Has PK Deficiency 15:35

1
Aging with Pyruvate Kinase Deficiency 15:38

1
REPLAY: Pyruvate Kinase Deficiency Foundation 27:17

1
Understanding Clinical Trials 27:42

1
LIVE in New Orleans: A Red Cell Revolution 48:33

1
Caregiver Series: Transitioning to Adult Care 38:14

1
Replay: The History of PKD 41:48

1
Parents Support: A PKD Caregiver Series 27:54

1
MythBusters Part 2 - Pyruvate Kinase Deficiency Edition 14:35

1
MythBusters Part 1 - Pyruvate Kinase Deficiency Edition 24:40

1
The History of PKD 41:48

1
I Walked in to My Hematologist’s Office: The Power of Storytelling 38:48

1
Beyond the Numbers: The Impact of PK Deficiency 37:56

1
Pyruvate Kinase Deficiency Advocacy Advisory Council (AAC) 27:08

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