Best Vwd Podcasts (2025)

1
Medicaid Cuts and vWD Clinical Trials 1:08:14

24d ago1:08:14

1:08:14

Potential Medicaid cuts are looming that could affect our community. Hear how you can take action! We also have exciting news about a clinical trial for von Willebrand’s disease and a special community story from Kayla Klein and her mother, Nancy Rodgers. Plus, Patrick has some fantastic updates from the WFH’s Comprehensive Care Summit in Dubai. Pr…

1
Hemostasis and Current Treatments 16:21

5d ago16:21

16:21

In this episode, Amy trades medical jargon for construction metaphors as she takes us on a journey through hemostasis, the body’s natural way of stopping a bleed. But what happens when the repair crew is understaffed—or missing entirely? That’s where factor replacement therapy comes in. Amy and our experts explain how it works, why timing matters, …

1
NBDF CEO weighs in on current events 54:26

10d ago54:26

54:26

NBDF CEO, Phil Gattone, is back on the show to share his thoughts on the current events happening in our bleeding disorder community. Plus, Hanna speaks with Stanford law professor Dr. Hank Greely and legendary hematologist Dr. Margaret Ragni about how we know when gene therapy is the right choice—and is our system ready to support it? And, an inte…

1
Pump the Brakes! – How Anti-Coagulation Works 15:49

1M ago15:49

15:49

On this exciting episode of Ask the Expert, join Amy as we delve into the fascinating world of blood clotting and anticoagulant therapy. We'll explore the clotting process with fun and relatable party analogies, featuring expert insights from Dr. Ben and Dr. Patrick. Discover how vital components like Protein C, Protein S, antithrombin, and TFPI wo…

1
New Music from Trevor Martin and info about Deliver Us, an upcoming documentary 1:24:28

1M ago1:24:28

1:24:28

One of our most stacked episodes in a while, featuring a chat and new music with Blood Brother, Trevor Martin. We also have Dr. Richard Lemon on the latest Gene therapy segment discussing the implications of recent hemophilia B gene therapy data. Plus, Allegra Hill and Kimberly Durdin from the only Black-owned birthing center in LA, and the visiona…

1
Shakeup at CDC - What does it mean??? 40:58

2M ago40:58

40:58

On April 1st, the Administration announced drastic changes and reductions to the federal health programs, one being the Division of Blood Disorders CDC, greatly affecting the bleeding disorders community. To discuss these concerns, we welcome a familiar face to many of you - Johanna Gray, federal policy advisor to NBDF and all-around wonderful huma…

1
The Big Three – Factor 8 + Factor 9 = Thrombin 19:29

2M ago19:29

19:29

Dive into the crucial roles of Factor VIII, Factor IX, and thrombin in the blood clotting process. Hosts Amy and Patrick introduce expert Dr. Benjamin J. Samelson-Jones to discuss the interplay between these factors, including how they activate each other and form clots. Featuring insights from Dr. Mark Reding on the myriad functions of thrombin, t…

1
Striking the Right Balance – Why Does it Matter in Hemophilia Treatment? 13:16

2M ago13:16

13:16

This episode of "Ask the Expert" titled "Striking the Right Balance – Why Does it Matter in Hemophilia Treatment?" delves into the concept of rebalancing in hemophilia treatment. Hosted by Amy Bord, the episode features expert insights from Dr. Ben Samuelson Jones, Dr. Patrick Ellsworth, and Dr. Mark Redding. They explain how hemophilia treatments …

1
I’m Fine: The Devil You Know 29:19

2M ago29:19

29:19

In this special pop-up episode of the Bloodstream Podcast, host Patrick James Lynch discusses the discontinuation of two Takeda bleeding disorder products with Anthea Cherednichenko, Takeda's VP Franchise Head Hematology and Transplant. Additionally, the 'I'm Fine' segment, sponsored by Sanofi, explores why people cling to the notion of being 'fine…

1
HFA CEO Dan Kelsey & Gene Therapy w Brendan Hayes 37:59

2M ago37:59

37:59

HFA Symposium is this weekend, and we have CEO Dan Kelsey on the podcast to tell us all about it! Plus, a gene therapy segment with the fantastic Brendan Hayes about what she’s hearing in the community about gene therapy for hemophilia B. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream P…

1
How Does Your Blood Clot?–The Clotting Cascade Explained 17:32

2M ago17:32

17:32

In this episode of 'Ask the Expert,' host Amy Board dives into the clotting cascade and explains how our blood clots. Alongside experts Dr. Ben Samuelson Jones, Dr. Amy Dunn, Dr. Mark Redding, and Dr. Patrick Ellsworth, Amy unpacks the complexity of the hemostatic system, discusses new treatments for hemophilia, and explores both the clotting and r…

1
Introducing ASK THE EXPERT: Hemophilia, On Balance 1:23

2M ago1:23

1:23

Ask the Expert is back with a twelve-episode deep dive into the evolving landscape of a groundbreaking new class of therapies in hemophilia treatment—rebalancing agents. Through expert insights and discussions, our new season, Hemophilia: On Balance, unpacks complex science to make it accessible and relevant to the hemophilia community. Episodes wi…

1
I'm Fine: Honesty & Lies 8:52

2M ago8:52

8:52

On this special pop-up episode of the Bloodstream podcast, we’re back with another 'I'm Fine' segment, which delves into the complexities of honesty and mental health. This episode features insights from Gabi Flores on the importance of addressing mental and emotional wellbeing, particularly for those managing chronic conditions. I’m Fine is presen…

1
NBDF CEO Phil Gattone + Dr. Nathan Connell on ASH Highlights 1:07:09

3M ago1:07:09

1:07:09

Patrick chats with NBDF CEO, Phil Gattone, after his first Washington Days! Plus, Dr. Nathan Connell gives a terrific ASH Recap full of the latest research and development in bleeding disorders and Amy speaks with FLOW co-host, Jessica Richmond about women with bleeding disorders. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn mor…

1
I'm Fine: The First Fracture 9:40

3M ago9:40

9:40

On this episode we explore the concept of projecting a façade of being 'fine' while struggling internally, especially within the hemophilia community. Featuring insights from Austin Lerner, the episode delves into the importance of expressing vulnerability, embracing un-fine moments, and fostering open communication to truly address one's challenge…

1
Happy Rare Disease Day! 38:13

3M ago38:13

38:13

We celebrate Rare Disease Day because we love our Rares! Also, folks from WHF join us to share their comprehensive summit and the gene therapy segment is back with a new host and Dr. Mark Kay and genetic counselor, Kaylee Dollerschell. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podc…

1
The wisdom of advocate Corbin Whittington 41:53

4M ago41:53

41:53

We’ve got distinguished patient advocate Corbin Whittington on the show. Corbin lives with chronic inflammatory demyelinating polyneuropathy (CIDP) and is an executive coach and chair for numerous Boards. He’s an incredible leader in the rare disease community and we’re excited to have him on BloodStream! We’ll also hear from Wes Michael from Rare …

1
Dr. Ben Samelson-Jones on Gene Therapy 33:02

4M ago33:02

33:02

Dr. Ben Samelson-Jones is on the show highlighting the advances of Gene Therapy in Hemophilia B and we’ll also share an exciting staffing update for Star Therapeutics, a biotech with an encouraging vWD pipeline. We’ll tell ya all about it! Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream …

1
Behind the Mystery: Rare and Genetic Diseases 35:04

5M ago35:04

35:04

Behind the Mystery is the only television series featuring rare, genetic diseases, and we have creators and producers Carri Levy and Molly Mager, to tell us all about it and how to watch. Also, from the Living with Hemophilia blog, Philippines residents Cza and Jared share their story about living with severe hemophilia B. All this and more! Presen…

1
Max Feinsten talks elbow surgery 34:29

5M ago34:29

34:29

Patrick and Amy reflect on their favorite moments of the BloodStream year, plus Max Feinsten is getting surgery and we get to hear about it. And then, another I’m Fine segment with Michael Bishop. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The BloodStream Podcast I’m Fine is presented by @SanofiUS …

1
Jonathan Cappiello is 1 out of 20 47:20

6M ago47:20

47:20

Patrick sits down with Jonathan Cappiello, an ultra-rare who hosts the podcast, 1 out of 20 (who also has a connection to Ryan White!). Plus, our final Gene Therapy segment of the year and those WHF USA announcements. All that and more on BloodStream! Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Notes: Subscribe: The …

1
Voices for Policy Change + 2025 HFA Preview with CEO Dan Kelsey 43:54

6M ago43:54

43:54

We’ve got HFA CEO Dan Kelsey on the show to give a 2025 preview for the organization. NBDF and Believe Limited have partnered on a new digital advocacy storytelling project, called Voices for Policy Change and we’ll tell you all about it! Plus, the new season of Stop the Bleeding! And the I’m Fine segment with Michael Bishop. Presenting Sponsor: Ta…

1
Gene Therapy Roundtable and Honoring Jess McLean (Page) 31:54

7M ago31:54

31:54

On the latest Gene Therapy segment, we host Blood Brothers Rick Starks, Colin Johnston, Bobby Wiseman for a roundtable discussion to hear their unique thoughts about the gene therapy landscape. We also honor Jess McClean (Page)’s life and her contribution to the bleeding disorder community. Presenting Sponsor: Takeda, visit bleedingdisorders.com to…

1
NBDF CEO drawing inspiration from local communities 38:05

7M 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
The new insurance nightmare you need to know about 53:36

8M 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
International Plasma Awareness Week, y’all! 38:36

8M 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
Live at BDC with CEO Phil Gattone! 42:13

9M 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
Hemophilia Film: What We Wished We Could Be 1:04:38

9M 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
Gene Therapy Reimbursement? We got you covered. 43:43

10M 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 Dark Side of High Achievement 37:21

10M 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
Clinical Trials, Caregiving, and NEW MUSIC!? 41:53

11M 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
The multi-faceted role of HTC social workers 1:02:23

11M 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
Life with an Invisible Disorder 28:15

12M 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
Mild Hemophilia Matters 56:20

1y 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
UK Blood Inquiry Clive Smith & Laurence Woollard 52:26

1y 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

1y 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

1y 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
New NBDF CEO, Phil Gattone 38:55

1y 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

1y 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

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

1+ y 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

1+ y 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
Preserving Tainted Blood History and Bath Bleeds 49:35

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

1+ y 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

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

1+ y 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
The Dark Side of Resilience + The Gratitude Game 44:10

1+ y 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
Resisting Change and Holiday Dynamics 22:08

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

1+ y 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

1+ y 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…

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