A(z) BloodStream Media csatorna legjobb podcastjai (2024)

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

3d ago37:49

37:49

1
NBDF CEO drawing inspiration from local communities 38:05

6d ago38:05

38:05

NBDF CEO Phil Gattone traveled to regional chapters (and got infused, y’all) to meet communities on the ground, and he tells us all about it! Plus, big news for the community with a few recent therapy approvals and the latest I’m Fine segment with Michael Bishop. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Sub…

1
Spreading the Word: Lab Tests – Part 2 18:05

8d ago18:05

18:05

On this episode of Thal Pals, hosts NinaMaria Badalamenti and Dr. Kevin Kuo delve into the second part of their discussion on lab tests. They explore the impact of factors like menstruation, nutrition, and illness on ferritin levels, and emphasize the importance of monitoring and managing iron levels through diet and medication. They also explain h…

1
IBSC and You; Taking the Mystery out of IBSC 30:42

9d ago30:42

30:42

On this first episode of Gut Matters: Discoveries and Innovations, hosts Johannah Ruddy, M.Ed., and Dr. Andrea Shin dive deep into the complexities of IBS-C (Irritable Bowel Syndrome with Constipation). Together, they dispel myths, discuss common symptoms, and break down what it means to live with this often misunderstood condition. Whether you’ve …

1
Tabatha McGee Means Business 39:23

10d ago39:23

39:23

On this episode of Cheat Codes, Dr. Z and Dr. C are joined by Tabatha McGee, Executive Director of the Sickle Cell Foundation of Georgia. Tabatha shares her remarkable journey from systems engineer to leading the foundation, driven by a personal mission to enhance the lives of sickle cell warriors. The discussion delves into innovative programs lik…

1
Introducing Gut Matters: Discoveries & Innovations 1:51

12d ago1:51

1:51

Welcome to Gut Matters: Discoveries and Innovations, a podcast dedicated to helping IBS patients take back control of their symptoms and lives. Hosted by Johannah Ruddy, M.Ed., IBS patient advocate and researcher, and Dr. Andrea Shin, a gastroenterologist and IBS expert, this show dives deep into digestive health. Join us as we share inspiring pati…

1
The new insurance nightmare you need to know about 53:36

20d ago53:36

53:36

Alternative Funding Programs are a nightmare new insurance tactic that has experts concerned. We’ve got Zack Duffy and Roland Lamy from the Hemophilia Alliance to break it down and tell you what to look out for. Plus, HFA’s Project ECHO and the latest Gene Therapy segment, all about Myths and Misconceptions. Presenting Sponsor: Takeda, visit bleedi…

1
From Omaha to Global Health: Dr. Xu's Path in Hematology 48:16

1M ago48:16

48:16

On this episode, Dr. Z and Dr. C welcome Dr. Julia Xu, a rising star in the field of sickle cell disease. Dr. Xu shares her inspiring journey from Omaha, Nebraska, to her current role at the University of Pittsburgh. The discussion covers her extensive background in global health, her research on anemia in sickle cell disease, and the impactful men…

1
International Plasma Awareness Week, y’all! 38:36

1M ago38:36

38:36

We recap NBDF’s BDC and welcome back PPTA CEO Anita Brikman to share more about International Plasma Awareness Week. Plus, the latest I’m Fine featuring guest host Michael Bishop. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast Help celebrate International Plasma Awareness Week! …

1
Understanding Lab Tests: Hemoglobin and Ferritin Explained – Part 1 26:06

1M ago26:06

26:06

On this episode hosts NinaMaria Badalamenti and Dr. Kevin Kuo discuss important lab tests for thalassemia treatment. They focus on hemoglobin, explaining its role in oxygen transportation, the significance of trends over specific numbers, and the differences for transfusion-dependent and non-transfusion-dependent patients. They also introduce ferri…

1
Gary Linehan's Mont Blanc Adventure - Part 2 19:53

1M ago19:53

19:53

We’re back with Gary Linehan, an avid hiker living with polycythemia vera (PV) to talk about his incredible hike around Mont Blanc. Gary shares his journey, the challenges he faced, and the heartwarming connections he made along the way, emphasizing the importance of living life to the fullest despite a PV diagnosis. Tune in to hear Gary's wisdom, …

1
Understanding Splenectomy in PK Deficiency 27:34

1M 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
Inspiration from Circumstance 22:58

2M ago22:58

22:58

Too often we see inspirational stories as someone who achieved their dream despite something. Despite a setback. Despite a condition. Despite a bleeding disorder. Not today. Chris talks with clothing designer Christian Harris who used his bleeding disorder to inspire his thesis and unique line of clothes… all about the Hapsburgs, and his personal h…

1
Live at BDC with CEO Phil Gattone! 42:13

2M ago42:13

42:13

Coming to you LIVE from NBDF’s Bleeding Disorder conference, Patrick is with CEO Phil Gattone right after Opening Session. A walk and talk you don’t wanna miss! Also, hear how HTCs have operationally aligned to administer gene therapy with Zack Duffy and Roland Lamy from the Hemophilia Alliance on the latest Gene Therapy segment. Plus, an interview…

1
Empowering Lives: Dr. Simone Uwan’s Journey with Sickle Cell Disease 41:55

2M ago41:55

41:55

In this special “Lunch and Learn” session sponsored by the Agios Diversity Council, Dr. Simone Uwan shares her inspiring journey living with and advocating for sickle cell disease. Dr. Uwan discusses her background, achievements in medicine and advocacy, and her personal experiences with misdiagnosis and the challenges faced by sickle cell patients…

1
Take The First Step 19:56

2M ago19:56

19:56

Your bleeding disorder doesn’t define you. But it is a part of who you are. And the only way to learn your potential, is to take that first step. Chris talks with Paul Sebastian and Sam Kishyo about their first steps, and learning that the journey can only take you as far as you’re willing to go. The Final Summit was also made possible by support f…

1
Journey Beyond Diagnosis: Gary Linehan's Hike and Hope 22:44

2M ago22:44

22:44

On this episode, Gary Linehan, an experienced educator and avid hiker, shares his profound journey from being diagnosed with polycythemia vera (PV) in 2021 to embarking on ambitious hiking adventures, including the Tour Mont Blanc. Linehan discusses his initial symptoms, the challenges of misdiagnosis, and the crucial support system that includes h…

1
Hemophilia Film: What We Wished We Could Be 1:04:38

2M ago1:04:38

1:04:38

Patrick has an exclusive conversation with the filmmakers of What We Wished We Could Be, a story about a couple who must sacrifice their dreams in order to confront the consequences of the contaminated blood scandal. Patrick sits down in-studio with screenwriter, Jenna-Louise Hawkins; Director, Luke Shelley; and producer Sophie Stacy about the chal…

1
007 - Is My 'Artist Facade' Real? (feat. Hady Afif) 26:51

2M ago26:51

26:51

In this new episode with Dubai-based photographer Hady Afif, we discuss the art industry, social media, and the significance of culture within an artist's work. Is it our duty to portray our heritage? Why is everyone suddenly so aloof and famous? What makes you a "real artist"? Do we have to portray a facade in real life for people to take us serio…

1
Why Me? Why Not Me?! 28:04

2M ago28:04

28:04

Inside the mind of everyone with a bleeding disorder exist two unique mindsets: “Why is this happening to me?” And “If I can take on this, I can take on the world.” Today, Chris talks with chef Mike Hargett and pediatrician Dr. Vyankatesh Pralikar about their unique journeys of facing their own doubts, and coming out stronger on the other side. The…

1
Live in Atlanta: Thriving with Thalassemia 46:11

2M ago46:11

46:11

On this episode of Thal Pals we’re live in Atlanta, Georgia for the 2024 Cooley’s Anemia Foundation’s 2024 Patient-Family Conference. We assembled a panel moderated by Dr. Kevin Kuo and guest host Shae Ghosh. The panel dove into inspiring stories and practical advice from individuals living with thalassemia. Brian Goff, CEO of Agios Pharmaceuticals…

1
Tell Your Story 27:30

3M ago27:30

27:30

Stories are more than tall tales. They help us relate. They inspire. They educate. They make us feel less alone. Chris talks with Chetan Motiwaras and Patrick James Lynch about the power of story when it comes to bleeding disorders, and how their drive to tell stories led them on their own life’s journey. The Final Summit was also made possible by …

1
Gene Therapy Reimbursement? We got you covered. 43:43

3M ago43:43

43:43

Patrick survives his first tornado warning and we’ve got Joana Baquero sharing education and advocacy updates on Factor 1 Deficiency and Tammy Black from the Immune Deficiency Foundation. Plus, a new Gene Therapy segment with Jim Kenny, an expert on pharmacy reimbursement. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show …

1
The Start of the Journey 26:27

3M ago26:27

26:27

Every story has a beginning. And every journey starts with that first step. Chris talks with Trevor Martin & Destiny Danaye, two budding artists with bleeding disorders who, despite their young age, have lived an entire life before their journey even began. The Final Summit was also made possible by support from Genentech. Visit GenentechHemophilia…

1
Season 3 Teaser Trailer 1:59

3M ago1:59

1:59

For many of us, the mountains we climb aren’t physical. They’re spiritual, mental, psychological, and ultimately inspirational. In this season, we’re hearing from people with bleeding disorders from all over the world, who faced their own final summit, and fought for their dreams despite all obstacles. Tune into Season Three of The Final Summit. Co…

1
The Dark Side of High Achievement 37:21

3M ago37:21

37:21

Is there a darker side to the extraordinary accomplishments of people with bleeding disorders? Guest segment host, Luke Pembroke, ask just that on the latest I’m Fine, featuring blood brother and Paralympian, Jack Bridge. Also, Patrick and Amy hit up the Chief Patient Officer Summit and got insight on what true patient inclusivity is all about. Plu…

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
Iron Will – Management of Iron Overload 24:58

3M ago24:58

24:58

On this episode of Thal Pals: The Alpha Beta Revolution, hosts NinaMaria Badalementi and Dr. Kevin Kuo dive into the topic of iron overload, a critical issue for patients with thalassemia. They discuss the body's mechanisms in handling iron, the dangers of iron overload due to blood transfusions, and the importance of chelation therapy. Dr. Kuo emp…

1
Janie Davis, Director of Patient Advocacy at Agios 14:29

4M ago14:29

14:29

Holly John, Agios’ Senior Director of Patient Advocacy, has a partner working with her on sickle cell disease patient advocacy! On this episode of Cheat Codes: A Sickle Cell Podcast, Dr. Z and Dr. C Janie Davis. Janie is the Director of Patient Advocacy at Agios Pharmaceuticals and is excited to work with the sickle cell community. SHOW DESCRIPTION…

1
Clinical Trials, Caregiving, and NEW MUSIC!? 41:53

4M ago41:53

41:53

On this episode, Patrick James Lynch honors the late Neil Frick, Senior VP for Medical Programs at the National Bleeding Disorders Foundation, recognizing his invaluable two-decade contribution to the bleeding disorders community. We also discuss hemophilia B gene therapy with Dr. Mark Redding, focusing on unique clinical trial designs and the role…

1
What to Know about Progression in Polycythemia Vera 23:43

4M ago23:43

23:43

On this episode, Dr. Douglas Tremblay from Mount Sinai School of Medicine in New York City discusses progression in polycythemia vera (PV). He elaborates on the transformation of PV into other diseases such as myelofibrosis and acute myeloid leukemia (AML), different ways progression can be defined, and the factors that contribute to the risk of pr…

1
The multi-faceted role of HTC social workers 1:02:23

4M ago1:02:23

1:02:23

Patrick sits down with HTC social workers, Kathaleen Schnur and Dianne Bartlett, about the ever-evolving role of social workers in the HTC comprehensive care system. Plus, on the latest I’m Fine, Patrick answers the question, What do clotting factor levels mean to me in this new age of hemophilia treatment? Show Notes: Subscribe: The BloodStream Po…

1
The Importance of Community-Based Organizations for the SCD Community 45:48

4M ago45:48

45:48

Join Dr. Z and Dr. C as they host a live panel from Florida with key figures from various community-based organizations (CBOs) dedicated to supporting those affected by sickle cell disease. Panelists share insights on the vital roles CBOs play, their unique challenges, successes, and the importance of collaborations with healthcare providers, pharm…

1
Cooley’s Care Walks 32:43

4M ago32:43

32:43

On this episode of Thal Pals, your host NinaMaria Badalementi, along with special guests Yasmeen and Paris, takes listeners through a detailed discussion about Cooley's Care Walks. We start with Yasmeen and Paris sharing personal experiences with thalassemia, the significance of community, and encouraging participation in Cooley's Care Walks. The e…

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
Life with an Invisible Disorder 28:15

5M ago28:15

28:15

Patrick sits down with Thomas Bartlett, Myasthenia Gravis patient and advocate, about the unique struggles of living with an invisible chronic disorder. Also, we all know if you want real answers — ask a nurse. We’ve got Andrea Buxton, Nurse Practitioner at the Hemophilia Outreach Center in Green Bay, WI, with her account of the first commercial do…

1
The Warrior Poet: A Rising Star: Dr. Alex Glaros 27:44

5M ago27:44

27:44

On this episode of Cheat Codes: A Sickle Cell Podcast, we’re coming to you again from Detroit, Michigan. Here, the docs sit down with Dr. Alex Glaros. Dr. Glaros is a Pediatric Hematologist-Oncologist at Children’s Hospital of Michigan. SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people…

1
Mild Hemophilia Matters 56:20

5M ago56:20

56:20

Mild hemophilia truly does matter and we’re with Shellye Horowitz, formally with HFA, to hear about HFA’s Mild Matters program. Plus the final Elite Athletes segment with Paul McLaughlin and I’m Fine with Luke Pembroke. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. I’m Fine and…

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

5M 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
UK Blood Inquiry Clive Smith & Laurence Woollard 52:26

6M ago52:26

52:26

Our blood brother buds, Clive Smith & Laurence Woollard join us today to share the latest from the ongoing saga of UK Blood Inquiry, plus our latest Gene Therapy segment has Mason Buxton’s story (the first hemophilia B patient to be commercially dosed with gene therapy!). Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, vi…

1
Navigating the Currents: Interferons in the Treatment of Polycythemia Vera 25:45

6M ago25:45

25:45

On this special episode of the BloodStream Podcast, we explore interferons in the treatment of polycythemia vera (or PV). This episode is brought to you by PharmaEssentia. If you’d like to learn more about polycythemia vera, check out our sister show PV Pod: Stories from the Marrow (brought to you by BloodStream Media and PharmaEssentia). Connect w…

1
On the Shoulders of Giants is a hit (!) and I’m Fine is back 38:37

6M ago38:37

38:37

Hear about the premiere of the On the Shoulders of Giants film from HFA Symposium with Patrick and Amy. Plus the I’m Fine segment is back with Luke Pembroke and Hazri Aris is featured on the latest Elite Athletes segment. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. On the Sho…

1
Revving Up for Clinical Trial Awareness in the Motor City 46:54

6M ago46:54

46:54

On this episode of Cheat Codes: A Sickle Cell Podcast, we’re live in the Motor City: Detroit, Michigan. This live event featured Dr. Z and Dr. C interviewing a panel of esteemed guests including Davinna Christian, Dr. Alex Glaros and Clifton Kirkman, II discussing clinical trial awareness. We also hear from Dr. Wanda Whitten-Shurney at the end of t…

1
New NBDF CEO, Phil Gattone 38:55

7M ago38:55

38:55

We have newly appointed NBDF CEO, Phil Gattone with us sharing his background and his vision for the organization and community. And, we have the story of the first commercially dosed patient of hemophilia B gene therapy. Hear from Jamison Buxton, the father of the patient…who also happens to be the director of the HTC. Show Notes: Subscribe: The B…

1
Dr. Glenn Pierce on the upcoming WFH Congress + CEO of Plasma Protein Therapeutics Association, Anita Brikman 45:09

7M ago45:09

45:09

Dr. Glenn Pierce is with us to share what to expect from the upcoming WFH Congress in Madrid, and Amy sits down with President and CCEO of the Plasma Protein Therapeutics Association (PPTA), Anita Brikman. FLOW co-host Jessica Richmond sits in for Patrick and we’ll finish up with an Elite Athletes segments will feature bleeding disorder community m…

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