Best BloodStream Media Podcasts (2024)

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

8h 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

4d 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

14d 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

1M 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…

1
Highlights from ASH with Dr. Akshat Jain 44:04

2M ago44:04

44:04

We’re back with Dr. Akshat Jain who shares highlights in bleeding disorder research from ASH 2023, plus the differences between hemophilia A vs hemophilia B gene therapies with Dr. Mark Redding. We close out with our latest Elite Athletes segments featuring bleeding disorder community legend, Perry Parker. Don’t miss it! Show Notes: Subscribe: The …

1
Introducing a New Thal Pal 30:17

2M ago30:17

30:17

On this episode, we reintroduce you to NinaMaria Badalamenti as our new co-host of Thal Pals. NinaMaria is a patient advocate who has previously appeared on the show. Alongside Dr. Kevin Kuo, the two discuss what’s new in thalassemia. SHOW DESCRIPTION Thal Pals: The Alpha Beta Revolution Podcast is intended for patients, caregivers, providers, and …

1
What We’ve Learned So Far About Polycythemia Vera 35:56

2M ago35:56

35:56

On this episode, we travel back to our previous episodes to deliver some highlights of what we’ve learned so far. Dr. Prithviraj Bose gives us an overview of polycythemia vera, patient Nick Napolitano discusses his diagnosis, husband and wife team Joe and Patty Monteleone discuss the caregiver/patient relationship, David Wallace talks about his ins…

1
HFA CEO Dan Kelsey and Rare Disease Day tribute 1:08:50

2M ago1:08:50

1:08:50

HFA CEO Dan Kelsey joins Patrick and Amy to respond to recent organizational changes, followed by Blood Brother, Carl Weixler, who shares a bit about HFA’s history, mission, and current state. Also, a tribute to Rare Disease Day, led by voices from BloodStream Media. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit b…

1
NBDF welcomes new CEO; HFA responds 28:50

3M ago28:50

28:50

NBFD landed a new CEO, and HFA has responded to recent organizational changes; plus, we hear from Dr. Mark Reding and Dr. Steven Pipe about their excitement over gene therapy being added to the treatment landscape in hemophilia. We close with @theHemeNP, Maya Bloomberg talkin’ Rare Disease Day. Show Notes: Subscribe: The BloodStream Podcast Present…

1
Polycythemia Vera: Treatment Considerations with Dr. Aaron Gerds 21:01

3M ago21:01

21:01

On this episode, we hear from Aaron Gerds, MD of the Cleveland Clinic about what to expect when starting treatment for polycythemia vera. He talks about setting treatment goals, monitoring treatment progress, how to have an open conversation with your doctor, and more on this episode of the PV Pod. Transparency Statement: The PV Cancer Podcast is p…

1
Preserving Tainted Blood History and Bath Bleeds 49:35

3M ago49:35

49:35

We’ve got a terrific interview with Kathy MacKay and Dana Kuhn about the efforts the Committee of Ten Thousand (COTT) is taking to preserve documents from the tainted blood tragedy. And another Elite Athletes segment featuring blood brother and cyclist, Giovanny Pernudi. Oh …and Patrick had a bath bleed. Show Notes: Subscribe: The BloodStream Podca…

1
Replay: My Dad Has PK Deficiency 15:35

3M 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
Replay: Cooley’s Anemia Foundation Family Conference: A Teen Conversation 45:35

3M ago45:35

45:35

On this episode we’re live in Los Angeles, California from the Cooley’s Anemia Foundation family conference. Co-hosts Laurice Levine and Ralph Colasanti host a panel of teenagers in conversation about their unique experiences with thalassemia. To learn more about Cooley’s Anemia Foundation, click this link. SHOW DESCRIPTION Thal Pals: The Alpha Bet…

1
Shakeup at HFA and a brand new Gene Therapy segment! 45:27

4M ago45:27

45:27

It’s a New Year and BloodStream is back with a terrific episode. Major changes at @HFA leave Patrick wondering about the future of one of our beloved national organizations and we have folks from the FAIR initiative and CHES to share their 2024 vision for the women in bleeding disorders movement (heck yeah!). Plus, a brand new segment this year on …

1
SNL screws up sickle cell. 40:35

4M ago40:35

40:35

We’ve got SNL screwups, the mainstream acronyms continue to butcher rare blood diseases. Plus, we’ve got a new ELITE ATHLETES segment with Anthony Pezzillo (who recently became an uncle; or expanded his uncledom) and I’m Fine, this time with a focus on the caregiver experience with Jessica Bombardier. We’ll get into it all, AND MORE, on this episod…

1
Sickle Cell Advocacy with Miss Teen Virginia, Ayana Johnson 32:09

4M ago32:09

32:09

On this episode of Cheat Codes: A Sickle Cell Podcast, we speak with Ayana Johnson. In addition to being a sickle cell warrior, Ayana is also Miss Teen Virginia ‘22, a teen ambassador of the SCDAA and founder of Ay’s Hope Cells. SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are…

1
The World Health Organization (WHO) gets it wrong 33:41

5M ago33:41

33:41

The World Health Organization made a decision that has heads scratching that could seriously impact hemophilia patients across the globe and a new I’m Fine segment with blood brother, Justin Levesque. Plus, Worlds AIDS Day with Maya Bloomberg and Patrick is pain-free (or close to pain-free) for the first time in a long (!!) time. Show Notes: Subscr…

1
New Horizons in PNH 20:35

5M ago20:35

20:35

Explore the current standards of care, best practices, and innovative therapies for PNH in our final episode. Stay up-to-date with the latest advancements that are shaping the future of PNH treatment and patient care. Content Independently Created by Bloodstream Media. Novartis is our exclusive advertising partner. This podcast was independently cr…

1
Peak Registry 27:02

5M 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
The Dark Side of Resilience + The Gratitude Game 44:10

5M ago44:10

44:10

Hear what Patrick and Amy are grateful for as we play The Gratitude Game, because ‘tis the season, y’all! Also, A new (and fantastic!) I’m Fine segment on the dark side of resilience and Ph.D. Olav Versloot on the latest Elite Athletes segment. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders.com to…

1
Provider and Clinician Experiences 20:26

5M ago20:26

20:26

Step into the shoes of healthcare providers and clinicians who have treated PNH patients. Gain a deeper understanding of their experiences, challenges, and the evolving medical landscape surrounding Paroxysmal Nocturnal Hemoglobinuria. Content Independently Created by Bloodstream Media. Novartis is our exclusive advertising partner. This podcast wa…

1
Caregiver and Family Experiences 19:54

5M ago19:54

19:54

Discover the vital role caregivers and families, including siblings, have played in the lives of PNH patients throughout history and today. Hear their perspectives and learn about the support systems that have made a difference. Content Independently Created by Bloodstream Media. Novartis is our exclusive advertising partner. This podcast was indep…

1
Resisting Change and Holiday Dynamics 22:08

6M ago22:08

22:08

Amy turns the table on the latest I’m Fine and puts Patrick in the hot seat as he shares how and why he resists change and the effect that has on his loved ones. Plus, Maya Bloomberg, @thehemenp, is back with a segment on family dynamics and holiday logistics with a bleeding disorder. Check it out on the latest episode of BloodStream. Show Notes: S…

1
Patient Experiences 25:19

6M ago25:19

25:19

Experience the journey of PNH patients, both historically and in the present, as we bring you the voices and stories of individuals who have faced this condition. Gain unique insights into the challenges and triumphs of living with PNH. Content Independently Created by Bloodstream Media. Novartis is our exclusive advertising partner. PNH Patient Su…

1
Introducing PNH: Facts, Fiction & FYI! 21:57

6M ago21:57

21:57

The BloodStream Podcast is off this week but we have something very special for you. Introducing PNH: Facts, Fiction & FYI. Dive deep into the critical history, medical background, and foundational insights of Paroxysmal Nocturnal Hemoglobinuria (PNH) in our inaugural episode. Join us as we set the stage for a comprehensive exploration of this rare…

1
Rugby & Hemophilia and Treatment Transitions w/ Mosi Williams 35:34

6M ago35:34

35:34

Mosi Williams, blood brother and social worker at an HTC in Northern California joins Patrick for the latest I’m Fine segment with a candid discussion about treatment transitions. And we have UK rugby player, Jess Page, who is living with hemophilia on our Elite Athletes with Hemophilia, the companion segment to the new film REDEFINING IMPOSSIBLE f…

1
Genetics in Pyruvate Kinase Deficiency 42:41

6M 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
Disease Awareness 20:57

6M ago20:57

20:57

Dive deep into the critical history, medical background, and foundational insights of Paroxysmal Nocturnal Hemoglobinuria (PNH) in our inaugural episode. Join us as we set the stage for a comprehensive exploration of this rare blood disorder. Our guests on this episode are Ilene Weitz, MD, Professor of Medicine at the Keck School of Medicine at the…

1
Replay: International Legends of Sickle Cell: Professor Clarisse Lobo & Dr. Kleber Fertrin 32:05

6M ago32:05

32:05

This episode of Cheat Codes is our first bilingual podcasting experience. In the first half of the episode, Dr. Z and Dr. C speak with Professor Clarisse Lobo and Dr. Kleber Fertrin in English about their experience with sickle cell in Brazil. In the second half, we hear from them in their native Portuguese language. SHOW DESCRIPTION Cheat Codes is…

1
Replay: Dr. Nica Cappellini - Mother of Thalassemia 40:05

6M ago40:05

40:05

Dr. Kevin Kuo and Laurice Levine talk to the “mother of Thalassemia” Dr. Nica Cappellini on today’s show. 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, Thal Pals strives to provide listeners with critic…

1
Introducing PNH: Facts, Fiction & FYI, 1:42

6M ago1:42

1:42

Introducing "PNH: Facts, Fiction & FYI," a limited series that unveils the enigmatic realm of Paroxysmal Nocturnal Hemoglobinuria (PNH). Join us as we journey through real stories, medical insights, and groundbreaking advancements, offering a comprehensive view of PNH. Explore the lives touched by this rare blood disorder and discover the intersect…

1
Sexual Intimacy, Artificial Intelligence in Healthcare, and Mindset 55:29

7M ago55:29

55:29

We’re back with another episode of BloodStream featuring Maya Bloomberg’s 5 tips for sexual health with a bleeding disorder and AI in Healthcare with Kevin Mills and Pat Mancini. Plus a new SHEmophilia segment and a I’m Fine segment with Mark Skinner. Show Notes: Subscribe: The BloodStream Podcast Presenting Sponsor: Takeda, visit bleedingdisorders…

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

7M 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
Thalassaemia International Federation Guidelines 41:01

7M ago41:01

41:01

On this episode, we speak with Dr. Androulla Eleftheriou, the Executive Director of the Thalassaemia International Federation as well as Dr. Khaled Musallam, Chief Research Officer at the Burjeel Hospital at Burjeel Medical City in Abu Dhabi, UAE. We discuss the Thalassaemia International Foundation guidelines on non-transfusion dependent thalassem…

1
Dr. Akshat Jain and NHL coach David Quinn 53:34

7M ago53:34

53:34

Dr. Akshat Jain, Director Inherited Bleeding Disorders at the Loma Linda University Children's Hospital, is here with a wide-ranging conversation, including gene therapy access and affordability in low resource areas. Plus, a new Elite Athletes segment featuring San Jose Sharks Head Coach, David Quinn and another installment of I’m Fine with a spot…

1
Regina Hartfield of the SCDAA 29:24

7M ago29:24

29:24

hhttp://On this episode of Cheat Codes: A Sickle Cell Podcast, we speak with Regina Hartfield, CEO of the Sickle Cell Disease Association of America, Inc (SCDAA). SHOW DESCRIPTION Cheat Codes is intended for patients, caregivers, providers, and the greater community of people who are impacted by Sickle Cell Disease. Each episode, Cheat Codes strive…

1
Embracing Change in Hemophilia Care and Back to School 31:58

8M ago31:58

31:58

Amy is with guest co-host Joshua Sterling Bragg with Back to School & Sickle Cell Awareness Month resources and a new I’m Fine segment about embracing change in hemophilia care. Plus Maya (@theHEMENP!) is back with thoughts on sports and fitness and author Tim Ryan join us! Show Notes: Subscribe: The BloodStream Podcast Back to School Resources at …

1
REPLAY: RISE UP for Sickle Cell Disease - A Warrior Panel 47:16

8M ago47:16

47:16

http://On this episode, Dr. Z and Dr. C talk to a panel of Sickle Cell warriors who were part of the RISE UP campaign. RISE UP is the name of Agios’ phase two and phase three clinical trial for Sickle Cell Disease. The campaign itself was directed by the warriors to help the community know about the trial, to help educate, to help answer any questi…

1
Patrick and Amy’s BDC Recap! 36:14

8M ago36:14

36:14

Patrick and Amy recap all the happenings at the recent Bleeding Disorder Conference in DC live from The Science Fair! We’ll discuss the rebrand to The National Bleeding Disorder Foundation (NBDF) and several sessions that caused interest, including two gene therapy patients with wildly different experiences. Also, we’ll premiere the first Elite Ath…

1
Iron Overload with Dr. Sujit Sheth 31:39

8M 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
Cooley’s Anemia Foundation Family Conference: A Teen Conversation 45:35

8M ago45:35

45:35

On this episode we’re live in Los Angeles, California from the Cooley’s Anemia Foundation family conference. Co-hosts Laurice Levine and Ralph Colasanti host a panel of teenagers in conversation about their unique experiences with thalassemia. To learn more about Cooley’s Anemia Foundation, click this link. SHOW DESCRIPTION Thal Pals: The Alpha Bet…

1
Taylor Swift changes Amy’s life, plus a new segment, and other stuff. 27:25

9M ago27:25

27:25

Don’t worry, Amy was given only 3 minutes to share her experience of The Eras Tour and then we get to the good stuff! Maya Bloomberg, the @TheHemeNP, shares four specific pillars of successful disclosure and we debut our new segment, I’m Fine. This new segment aims to challenge our “normals” and truly consider the possibilities. Show Notes: Subscri…

1
The Importance of Advocacy (India) 28:01

9M ago28:01

28:01

A trip to India shines a light on how important advocacy is, and how we can’t stop fighting in our quest for a better world. The Final Summit was also made possible by support from Genentech. Visit GenentechHemophilia.com to take a look at how they are supporting the hemophilia community. Donate to Save One Life! Produced by BloodStream Media…

1
Self Advocacy & Patient Education 23:44

9M ago23:44

23:44

Our guest on this episode is David Wallace, founder of The PV Reporter. Diagnosed with polycythemia vera in 2009, David created this website as an MPN (myeloproliferative neoplasm) resource hub and a way to give back to the community. Transparency Statement: The PV Cancer Podcast is produced by Believe Limited and made possible by PharmaEssentia. V…

1
Not Just A Man’s Disease (Kenya) 24:13

9M ago24:13

24:13

Chris connects with an old friend from Kenya to discuss the myth that hemophilia is a “man’s disease,” and how women face inequality in care across the world. The Final Summit was also made possible by support from Genentech. Visit GenentechHemophilia.com to take a look at how they are supporting the hemophilia community. Donate to Save One Life! P…

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