Best BloodStream Media Podcasts (2025)

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Replay: PKD International Guidelines 37:30

Play Pause

4d 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…

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Blood Brothers - Part 1 1:02:19

7d ago1:02:19

1:02:19

On this special episode of the Bloodstream Podcast, hosts Patrick James Lynch and Marc Pangilinan kick off a three-part Blood Brother Collaboration, featuring heartfelt stories and insights from men across the bleeding disorders community. The discussion centers on lived experiences, including complicated grief, joining the community, wearing multi…

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Future Flow – Research & What's Next in Hemostasis 19:52

11d ago19:52

19:52

In this episode of Ask the Expert, Amy B. dives into the future flow of hemostasis research, exploring the cutting-edge therapies shaping bleeding disorder care. Join Drs. Patrick Ellsworth, Janice Staber, and Ben Samelson-Jones as they break down rebalancing agents, RNA therapies, and patient-driven discoveries that are guiding smarter, more preci…

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I'm Fine is back! Featuring Benjamin Denman 27:16

18d ago27:16

27:16

In this episode of BloodStream, we look back at the history of gene therapy and highlight key voices from Portraits of Progress. We also share the story behind I'm Fine, featuring community advocate Benjamin Denman, recently honored at the Hope Gala. Plus, we introduce HFA's new Voice of the Community initiative and how you can get involved in shap…

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Driving Change: MiCaringHeart & the Fight for Sickle Cell Care 13:36

16d ago13:36

13:36

On this episode, Dr. Z and Dr. C welcome Shayan Siddiqui, founder of MiCaringHeart, to discuss his impactful work supporting sickle cell patients in Detroit. Shayan shares how his family's experiences inspired initiatives like Cabs for Kids, providing transportation to medical appointments, and Outsmart, offering free tutoring for children with chr…

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The Red Ink Project & Global Action Network for Sickle Cell 54:00

21d ago54:00

54:00

This week on BloodStream, we're talking to changemakers. Elsa and Ann Kendall from The Red Ink Project share how they're shifting the story for women and girls in bleeding disorders. And advocate Lanre Tunji-Ajayi joins us to discuss building global networks for sickle cell and other inherited blood disorders. A conversation about voice, visibility…

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A Patient's Journey Living with IBS-C 33:51

23d ago33:51

33:51

On this episode of Gut Matters, host Johanna Ruddy, DHSc. MEd, Senior Director of Patient Advocacy at Ardelyx and Dr. Andrea Shin, interview Rebecca Kaplan, an IBS-C patient who has lived with the condition for over 15 years. Rebecca shares her personal journey, the challenges she has faced, and how she manages her symptoms. The conversation highli…

1
'So What Did I Miss?': A Recap of the 2023/2024 NASCC Meeting 46:50

1M ago46:50

46:50

In this special episode of Cheat Codes, Dr. Z and Dr. C hand the co-hosting mic to Dr. Julie Kanter for a lively walk through the history of the National Alliance of Sickle Cell Centers (NASCC) annual meetings. Alongside Dr. Sophie Lanzkron, Dr. Francis Coyne, and Dr. Alexis Leonard, they revisit key moments from 2022's belly-dancing dinner to 2025…

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Thalassemia Myth-Busting: Part 2 – Complications, Exercise, & Transfusions 20:24

1M ago20:24

20:24

In part two of their myth-busting series, NinaMaria Badalamenti and Dr. Kevin Kuo continue to break down common misconceptions about thalassemia. They discuss the risks and complications for both alpha and beta thalassemia, the importance of individualized care, and why physical activity is encouraged for people living with the condition. The episo…

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Replay: Iron Overload with Dr. Sujit Sheth 31:39

1M 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…

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The Rare Factor – Deficiencies & Re-Balancing Strategies 23:25

1M ago23:25

23:25

Join host Amy Board as we continue to dive into the evolving world of bleeding disorder treatments. This episode of Ask the Expert explores how emerging therapies—like rebalancing and non-factor agents—are tested, monitored, and kept safe. With insights from Drs. Mark Redding, Janice Stabler, and Tammy Singleton, we break down the complexities of d…

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Beyond the Diagnosis 40:08

2M ago40:08

40:08

Art and science collide on this episode of BloodStream Podcast! Hosts Patrick James Lynch and Amy Board bring stories that inspire and inform the bleeding disorders community. Patty Weltin and the Beyond the Diagnosis exhibit show how artists bring portraits of children with life-altering diseases to life. These works travel to hospitals, medical s…

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Rising Stars in Sickle Cell: Dr. Alyssa Schlenz 39:33

2M ago39:33

39:33

In this Rising Star episode from the NASCC meeting in Stowe, Vermont, Dr. Z and Dr. C spotlight Dr. Alyssa Schlenz, a psychologist transforming sickle cell care through early developmental screening and neuropsychological support. Dr. Schlenz shares her journey into the field, the critical role of prevention and early intervention, and the unique c…

1
Thalassemia Myth-Busting: Part 1 – Fatigue, Hemoglobin & Iron Levels 19:31

2M ago19:31

19:31

In this episode of Thal Pals: The Alpha Beta Revolution, hosts NinaMaria Badalamenti and Dr. Kevin Kuo tackle common myths and misconceptions about thalassemia. They discuss the importance of communicating symptoms like fatigue to healthcare providers, the complex relationship between hemoglobin levels and how patients feel, and the realities of ir…

1
Julie Owens: Breaking Barriers, Building Bridges 28:10

2M ago28:10

28:10

Julie Owens, a TED patient, didn't allow her diagnosis to define her. Instead, it became her mission to transform the rare disease landscape. As a passionate advocate for diversity in rare disease research, Julie is rewriting the narrative around who gets seen, heard, and represented in the TED community. Her story is both deeply personal and power…

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Joint Health and Gene Therapy - Live from BDC! 1:04:13

2M ago1:04:13

1:04:13

We're live at BDC! Host Amy Board take you straight to the exhibit hall floor, chatting with doctors like Drs. Quon, Sidonio, and Radak, plus patient advocates Collin Johnson and Matt Capsel. From man-on-the-street interviews to a touching story from Greg, this episode reminds us all to run—not walk—towards science. Join us for real conversations, …

1
Mind Your Gut: Breaking the Cycle of IBS and Emotional Wellbeing 36:51

2M ago36:51

36:51

On this episode, Dr. Andrea Shin and Johanna Ruddy, DHSc. MEd welcome Dr. Megan Riehl, a leading health psychologist, to discuss the powerful connection between the gut and the brain in IBS with constipation. They explore the emotional impact of IBS, the importance of empathy and validation in patient care, and practical tools like gut-directed hyp…

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Channel swimmer (and blood brother!) Tim Stowers 33:29

2M ago33:29

33:29

On this episode of BloodStream, hosts Patrick James Lynch and Amy Board share stories of remarkable achievement and progress in bleeding disorders. Hear from Tim Stowers, a severe hemophilia A patient who has summited Everest and completed solo English Channel swims, as he shares his journey of resilience and determination. Plus, get the latest upd…

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Good Sickle Cell Care 50:06

2M ago50:06

50:06

In this live episode from the NASCC meeting in Stowe, Vermont, Dr. Z and Dr. C are joined by a powerhouse panel: Dr. Payal Desai, Dr. Seethal Jacob, Dr. Pat McGann, and Dr. Andy Ellner to unpack what truly defines great sickle cell care. The group explores the importance of comprehensive, continuous, and patient-centered models, from inpatient to o…

1
Women and Clotting - What You Need to Know 18:12

2M ago18:12

18:12

In this episode of Ask the Expert, we focus on women with bleeding disorders — a group that has historically been overlooked in research and clinical care. Heavy menstrual bleeding, mild and moderate hemophilia, and von Willebrand disease have often gone underdiagnosed or mischaracterized, leaving many women without the care they need. Amy Board si…

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Success Reimagined: Living a Life That Matters 21:52

2M ago21:52

21:52

In July 2024, Chris Bombardier leads a team of climbers with bleeding disorders on an attempt to summit Mont Blanc, the tallest peak in the Alps. Chris is older and wiser than he was when he climbed the Seven Summits–but now he has new responsibilities, like fatherhood. This episode is brought to you by Genentech. Visit http://www.hemashort.com/ to…

1
WHO Guidelines Updated! 42:56

2M ago42:56

42:56

On this episode of BloodStream, we explore the World Health Organization's updates to the Essential Medicines List and what they mean for bleeding disorders care. Hemophilia B mom and creator Jesseca Lockie shares her perspective on advocacy and storytelling online, while Domenic and his mom open up about how gene therapy has transformed his daily …

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History & Founding of NASCC 39:07

3M ago39:07

39:07

In this episode of Cheat Codes, Dr. Z and Dr. C sit down with Dr. Julie Kanter, Dr. Sophie Lanzkron, and Dr. Marsha Treadwell to spotlight the National Alliance of Sickle Cell Centers (NASCC). They explore how NASCC came to life, its mission to unite multidisciplinary teams, and its role in setting consensus guidelines for sickle cell care. From bu…

1
Managing Your PV and Mental Health 29:34

3M ago29:34

29:34

On this episode of the PV Pod: Stories from the Marrow, hosts Kay and Josh are joined by Dr. Al Freedman, a psychologist and rare disease advocate, to discuss the mental health challenges faced by people living with polycythemia vera (PV) and other rare diseases. Dr. Freedman shares his personal story as a parent and professional, offering insights…

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Leading with Values: The Challenge of Building Something Bigger 19:43

3M ago19:43

19:43

After climbing the Seven Summits, Chris becomes executive director of Save One Life. It's a chance to help people with bleeding disorders. But it's also his first time in a leadership role. This episode is brought to you by Genentech. Visit http://www.hemashort.com/ to watch the short film. Guests: Amy Board, MNM, Believe Limited Senior Vice Presid…

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Emerging treatment for vWD?! 42:30

3M ago42:30

42:30

Is there a new treatment for von Willebrand Disease on the horizon? This week on BloodStream, we're joined by Jess Swann and Dr. Ben Kim from Star Therapeutics to talk about their promising pipeline and what it could mean for the vWD community. From science to support, they share their commitment to innovation and the people at the heart of it all.…

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Building Community in Patient Advocacy - One Warrior at a Time 27:02

3M ago27:02

27:02

In this episode of Cheat Codes, Dr. Z and Dr. C are joined by renowned advocates TaLana Hughes and Cassandra Trimnell to explore what "the sickle cell community" truly means. They discuss how patients, caregivers, providers, and allies form interconnected, and often overlapping, communities that bring hope, support, and change. From building trust …

1
Navigating Fertility, Pregnancy, & Parenthood with Thalassemia 33:54

3M ago33:54

33:54

Hematologist Dr. Arielle Langer joins host NinaMaria Badalamenti to unpack fertility, pregnancy, and family planning for people with thalassemia. From timing and iron control to genetic counseling, birth control options, and postpartum care, this episode offers practical, clear guidance for every stage of the journey. SHOW DESCRIPTION Thal Pals: Th…

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Climbing the Impossible: Setting—and Achieving—Big Goals 17:20

3M ago17:20

17:20

Chris looks back on his journey to climb the Seven Summits through a new lens: what it was like to become a role model in the international bleeding disorder community, and how it affected him. This episode is brought to you by Genentech. Visit http://www.hemashort.com/ to watch the short film. Guests: Dr. Ryan Warner, clinical psychologist and spe…

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Dr. Raymond Douglas: The Science of Healing and Hope 21:44

3M ago21:44

21:44

World-renowned oculoplastic surgeon Dr. Raymond Douglas joins Andrea to share his unique perspective on patient care that goes far beyond the operating room. Dr. Douglas explains how he helps patients restore more than just their vision and their health. He helps them restore their sense of self. Dr. Douglas reveals how individualized care can tran…

1
Patrick's Surgery and Ed Rogoff's book 46:04

3M ago46:04

46:04

Edward Rogoff, Blood Brother, NY chapter board member, and author of Scary Diagnosis, joins us on today's BloodStream. We hear the powerful stories behind community tattoos and get an update from PJL on his ankle surgery and recovery. This episode is full of resilience, creativity, and the strength we find in unexpected places. Presenting Sponsor: …

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The Fork in the Road: When the Dream Ends, What's Next? 21:19

3M ago21:19

21:19

After pursuing medical school, Chris finds his true passion: helping people with bleeding disorders. And a live-changing trip to Kenya inspire Chris to climb Mt. Kilimanjaro. This episode is brought to you by Genentech. Visit http://www.hemashort.com/ to watch the short film. Guests: Patrick James Lynch, Founder and CEO of Believe Limited, (Instagr…

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The Success Myth: Why Everything Isn't Possible (And That's OK) 20:19

3M ago20:19

20:19

Chris takes us back to his days as a college baseball player with a bleeding disorder dreaming of the pros. How do you face your limitations? And how do you accept it when a dream doesn't work out? This episode is brought to you by Genentech. Visit http://www.hemashort.com/ to watch the short film. Guests: Joana Baquero, business strategist and res…

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Building Resilience: Navigating IBS-C with Strength and Skill 41:36

3M ago41:36

41:36

In this episode of Gut Matters: Discoveries & Innovations, hosts Andrea Shin, MD and Johannah Ruddy, DHSc. MEd discuss the importance of resilience in managing IBS with constipation (IBS-C) with GI psychologist Dr. Lori Keefer. They explore practical strategies, including Dr. Keefer's GRITT method, and delve into how patients can cultivate resilien…

1
Inhibitors & Rares & Re-Balancing Explained 18:10

4M ago18:10

18:10

This week on Ask The Expert, the script is being flipped for patients with inhibitors and rare factor deficiencies! For years, treatment options were scarce—or even nonexistent. Now, rebalancing agents are changing the game, restoring clotting balance without relying on replacement factors. Amy is joined by Dr. Ben Samuelson Jones, Dr. Tammy Single…

1
Gene Therapy Around the World 35:04

4M ago35:04

35:04

Do you ever wonder who's actually getting gene therapy around the world? So have we! Dr. Hank Greely from Stanford and Simon Fletcher, a nurse and PhD Candidate from Oxford, break it down in a way that's eye-opening and real. Then stick around for Dr. Radek Kaczmarek's update on the latest game-changing research. Two fascinating chats, one episode,…

1
Regular and Non-Regular Transfusions in PK deficiency 38:45

4M ago38:45

38:45

Join Dr. Rachael Grace as she interviews Dr. Eduard van Beers, a leading expert in rare anemia including Pyruvate Kinase (PK) deficiency. They discuss the clinical challenges, benefits, and complications associated with transfusions for PK deficiency, underscoring the importance of personalized care and international collaboration for optimizing pa…

1
Self Advocacy in Polycythemia Vera: A Patient's Perspective 24:37

4M ago24:37

24:37

On this episode of the PV Pod, hosts Kay and Josh discuss the importance of self-advocacy for those living with polycythemia vera (PV). They speak with Susan Brooks about her diagnosis journey, her experiences with advocating for her own health, and the value of staying informed and connected within the PV community. Transparency Statement: The PV …

1
Justine's Story: From Darkness to Light 22:52

4M ago22:52

22:52

What does it take to reclaim your life after two decades of battling an invisible illness? Justine's journey with Graves' disease and TED is a masterclass in persistence, self-advocacy, and hope. After years of misdiagnosis and struggle, she discovered the treatment that changed everything and now she's on a mission to light the path for others. He…

1
Introducing Through Our Eyes: A Podcast about Thyroid Eye Disease 3:35

4M ago3:35

3:35

Through Our Eyes is the first and only patient-led podcast dedicated to Thyroid Eye Disease (TED), hosted by TED patient and advocate Andrea Perryman. In a world where rare diseases often remain invisible, this groundbreaking series amplifies the voices that matter most, the patients themselves. Each episode unveils the raw, transformative stories …

1
Redefining Success: A Personal Journey 2:28

4M ago2:28

2:28

What happens when a veteran mountain climber with hemophilia returns to mountaineering after a six-year layoff? In 2018, Chris Bombardier became the first hemophiliac to climb the Seven Summits, including Mt. Everest. In 2024, Chris leads a group of climbers with bleeding disorders on a daring attempt to summit Mont Blanc, the highest peak in the F…

1
Actress Sami Rappoport's short film, VIII. Plus Jeff & Barb with Dr. Joanna Davis 54:27

4M ago54:27

54:27

What do a heartfelt short film, a Hollywood actress, and a powerful community story all have in common? This week's BloodStream Podcast. Actress Sami Rappoport shares how her grandfather's life with hemophilia inspired her latest project, and Dr. Joanna Davis sits down with Barb Forss and Jeffrey Moualim for a conversation you won't want to miss. J…

1
Bleeding Disorders Conference preview with NBDF's Phil Gattone 22:52

4M ago22:52

22:52

Phil Gattone joins the latest BloodStream Podcast to preview NBDF's upcoming Bleeding Disorders Conference, coming mid-August. Plus, Amy and Patrick take a trip down camp memory lane, sharing summer stories from their days at hemophilia camp. Tune in for a mix of updates and nostalgia. Presenting Sponsor: Takeda, visit bleedingdisorders.com to lear…

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The Importance of Diversity in Clinical Trials with Sue Edelstein 31:23

4M ago31:23

31:23

On this episode, Johanna Ruddy, DHSc. MEd, Senior Director of Patient Advocacy at Ardelyx and gastroenterologist Dr. Andrea Shin interview Susan Edelstein, Senior VP of Clinical Research at Ardelyx. They discuss the critical role of patient diversity in clinical trials, emphasizing the impact of demographic factors on drug efficacy and the importan…

1
Quick Recap! Your Clotting Cheat Sheet 20:44

4M ago20:44

20:44

Rev your engines and put the pedal to the metal on a wild ride through the clotting cascade! Amy Board and a pit crew of medical experts take you on an uproarious recap journey through the first six episodes, using engines, dominoes, and treasure maps to drive their points home. But hold onto your helmets—there's fresh and exciting science just aro…

1
Hemophiliac of Love with Max Feinstein (!!) 40:08

5M ago40:08

40:08

Our bud, Max Feinstein, is back with us to share the outcome of his elbow surgery and he surprises us with a cover of Hemophiliac of Love (!!). Plus, the most pressing question when it comes to gene therapy for hemophilia B: How long does it last? Hanna does a deep dive into that very question with guest, Dr. Andrew Davidoff. Presenting Sponsor: Ta…

1
Breaking the Silence: Thalassemia, Stigma & Strength in the Arab Community 28:20

5M ago28:20

28:20

In this powerful Arabic-language episode, Dr. Sherif Badawy shares his journey from Egypt to the U.S., his lifelong passion for thalassemia care, and the silent weight of stigma families often carry alone. From gene therapies to community education, this one's about more than medicine—it's about connection. A must-listen for anyone impacted by thal…