BloodStream
BloodStream is an entertaining and informational podcast for the bleeding disorders community. Each week, hemophilia patient Patrick James Lynch and former non-profit director Amy Board are joined by advocacy leaders, medical experts, and other guests to discuss the latest news, scientific advancements, policy initiatives, and so much more. Subscribe wherever you listen, or search BloodStream Podcast on YouTube to catch every episode there. Produced by Believe Limited. Presenting sponsor: Takeda.
Episodes
Hemophilia B and Telemedicine with Zebra For Care!
Could new research change the way hemophilia B carriers are cared for during pregnancy? On this episode of BloodStream, Patrick and Amy explore emerging research that challenges long-held assumptions about factor IX levels during pregnancy and what it could mean for patients and providers. Nathan Mermilliod shares his experience living with hemophilia B, and Dr. Steven Fein discusses the evolving
Navigating the Hemophilia Journey: A Conversation with Dr. Singleton and Peter Fischer
Please see https://www.pfi.sr/HYMPAVZI_PI for Full PI On this episode of BloodStream, Patrick facilitates a conversation between Peter, who is living with hemophilia A, and Dr. Tammuella Chrisentery-Singleton, a board-certified hematologist and Chief Science Officer (CSO) for The American Thrombosis and Hemostasis Network (ATHN), to explore the shared decision-making process and why it matters. We
Another Barb & Jeff Interview with Gary McLain
On the latest episode of BloodStream, Patrick sits down with Cassie Miller, a parent raising two daughters with von Willebrand disease. Together, they talk about staying solution-focused, trusting your instincts, and advocating when the path forward isn't clear. Jeff and Barb return to the podcast with therapist Gary McClain for a thoughtful conversation about the emotional side of living with a r
How the Patient Perspective Led to a Hemophilia Medical Breakthrough
Please see https://www.pfi.sr/HYMPAVZI_PI for Full PI. #HYMPAVZISponsored William S. Somers, Ph.D., was a biotherapeutics research and development leader with more than 30 years of experience across biotechnology and pharmaceutical organizations, including Pfizer. As a scientist living with hemophilia, Dr. Somers played a key role in driving the patient-centric and purposeful design of HYMPAVZI (m
FLOW Podcast Has a New Look!
On the latest episode of BloodStream, Patrick and Amy introduce The Flow podcast rebrand, preview our upcoming Hemophilia B series with Zebra for Care, and share the latest hot tips for sending your kids to camp. Listen now and subscribe to BloodStream wherever you get your podcasts so you do not miss what is coming next. Show Notes: Project Elevate Her Presenting Sponsor: Takeda, visit bleedin
A candid convo with HTC nurse practitioner, Joe Stanco
The FED UP Act is headed to Congress and could reshape how women and girls with bleeding disorders are diagnosed, treated, and supported! On the latest episode of BloodStream, Amy and Patrick sit down with Joe Stanco, HTC Family Nurse Practitioner and founder of the Hemostasis and Thrombosis Nursing Association, for a candid conversation about today's hemophilia care landscape and where it is head
Climbing the Seven Summits to raise awareness?!
What does it look like to raise awareness from the top of the world? On the latest episode of BloodStream, Maia Meier joins our beloved hosts, Patrick and Amy, to talk about her mission to climb the Seven Summits through Project Elevate Her and bring visibility to women and girls living with bleeding disorders. From high-altitude expeditions to the everyday realities of advocacy, the conversation
Lived experience across generations of bleeding disorders
On the latest episode of BloodStream, we look at what is really underneath the words "I'm fine" and who it is serving to keep things that way. In I'm Fine, a family story across generations with bleeding disorders traces what has changed, what has not, and how honesty can begin to break cycles of silence that have long been passed down. What emerges is a closer look at resilience, inheritance, and
Plasma donors, RARE BLOOD, and advocacy wins
On this episode of BloodStream—our plasma donation series continues with a powerful second installment featuring donor Hannah and the story behind what it really means to give. We've also got a packed lineup: a look at momentum building at the WFH World Congress, policy progress led by State Senator Joseph Addabbo supporting families with rare disorders, and new momentum in storytelling as Sanofi
What happened to HEMGENIX!? An update on gene therapy.
CSL Behring just announced a global "stockout" of Hemgenix—what's happening, and what does it mean for patients? On this episode of BloodStream Podcast, we break down the news, launch our mini-series on plasma donation, and hear from Thomas Savage in our I'm Fine segment, sharing the highs, the lows, and the reality of living with a severe bleeding disorder. Pain, perseverance, and the lessons le
Understanding Hemophilia A & B with Inhibitors: SEVENFACT in Focus
In this special partnered episode of the BloodStream Podcast, hosts Patrick James Lynch and Amy Board speak with hematologist Dr. Tami Singleton about hemophilia A and B with inhibitors, a complex condition that changes how bleeding episodes are treated. Dr. Singleton explains what inhibitors are, why they develop, and how they impact clotting and everyday life for patients and families. The conve
100 Years of vWD w/ Dr. Nathan Connell
This year marks 100 years since von Willebrand disease (vWD) was first described, and on this episode of BloodStream we take a closer look at how far the field has come. Our beloved hosts, Patrick and Amy happily welcome Dr. Nathan Connell, hematologist and leading expert in bleeding disorders, for a conversation about the past, present, and future of vWD. Together they explore how our understandi
Psychosocial support and bye bye, BioMarin
Bleeding disorders aren't just medical conditions — they're lived experiences shaped by resilience, community, and support. On this episode of BloodStream Podcast, Patrick James Lynch sits down with the WFH working group to explore why psychosocial care matters just as much as medicine and how human connections help people thrive. Rocky Williams joins to share the power of positivity and what it
Jeff & Barb with Connie Montgomery!
On this episode of BloodStream, we're thrilled to sit down with Connie Montgomery alongside Jeff and Barb for a warm, wide-ranging conversation grounded in lived experience and deep community roots. Together, they reflect on the moments that shape advocacy, the evolution of the bleeding disorders space, and the power of staying connected to one another. Plus, a nod to Rare Disease Day, a bit of Bl
A preview of 2026 World Congress with Dr. Glenn Pierce
On this episode of BloodStream, we get a sneak peek at the 2026 World Congress with Dr. Glenn Pierce, Vice President, Medical at the World Federation of Hemophilia. What conversations are shaping the agenda? Where is the science heading? And how does a global convening like World Congress moves the needle on access, equity, and innovation for people living with bleeding disorders? Dr. Pierce share
ASH 2025 Highlights
ASH 2025 brought a wave of new data — and on this episode, we're digging into what stood out. Patrick and Amy welcome Dr. Akshat Jain to talk through the research, the momentum in hematology, and the conversations coming out of this year's meeting. What's generating excitement? What feels meaningful? And what could shape care moving forward for the bleeding disorders community? If ASH sets the ton
Amy's History in Hemophilia
Patrick and Amy sit down to hear her story—how she first got involved in the bleeding disorders community back in 2003, and how patient advocacy became her passion. Along the way, they share laughs about their unexpected pasts as actors and the moments that shaped their paths. Also on this episode of BloodStream, our hosts also look back on the year in gene therapy, spotlighting patients, clinicia
Top Bleeding Disorders Stories of 2025
On this episode of BloodStream, we look back at a year that reshaped the bleeding disorders community. Our Top Stories of 2025 segment explores the biggest shifts, from expanded treatment choices and growing complexity, to hard conversations about safety, trust, and the real-world limits of innovation. We examine gene therapy's reality-check moment, global progress through changes to the WHO Essen
Blood Brothers - Part 3
In this special year-end episode of the Bloodstream Podcast, Patrick and guest host Mark Pangilinan conclude their powerful three-part Blood Brother series featuring the voices and stories of men living with bleeding disorders across the country. Together, they explore themes of complicated grief, advocacy, identity, fatherhood, discrimination, and the emotional realities that often go unspoken wi
The Stress of Shifting Roles with Cheri Clark
On this episode of BloodStream, Cheri Clark opens up about juggling life as a nurse, patient, caregiver, and board member, all while managing her own health. She shares the pressure of always saying "I'm fine," the moments she's pushed past her limits, and the lessons she's learning about setting boundaries that actually stick. We also hear from Nicole Angeles, reflecting on her second pregnancy w
Blood Brothers - Part 2
This episode of the Bloodstream Podcast continues the Blood Brother Collaboration, featuring candid conversations among men living with bleeding disorders. Guests share personal stories of resilience, complicated grief, and the importance of community support. The discussion highlights the unique challenges faced across the lifespan, from childhood through aging, and emphasizes the value of open d
Blood Brothers - Part 1
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 multiple hats, and challenges across the lifespan. List
I'm Fine is back! Featuring Benjamin Denman
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 shaping the future of bleeding disorders care and advo
The Red Ink Project & Global Action Network for Sickle Cell
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, and what it takes to lead. Presenting Sponsor: T
Beyond the Diagnosis
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 schools, galleries, and museums, raising awareness
Joint Health and Gene Therapy - Live from BDC!
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, patient perspectives, and insights on gene therap
Channel swimmer (and blood brother!) Tim Stowers
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 completed solo channel swims, as he shares his journey of resilience and determination. Plus, get the latest updates on Star Therapeutics' lead VWD therapy, now entering a pivotal Phase 3 tri
WHO Guidelines Updated!
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 life. Real stories, important updates, and convers
Emerging treatment for vWD?!
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. Plus, Patrick and Amy catch you up on the latest
Patrick's Surgery and Ed Rogoff's book
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: Takeda, visit bleedingdisorders.com to learn more.
Gene Therapy Around the World
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, this is BloodStream you don't want to miss! Pre
Actress Sami Rappoport's short film, VIII. Plus Jeff & Barb with Dr. Joanna Davis
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. Jeffrey Moualim, Barbara Forss and Joanna Davis, M.
Bleeding Disorders Conference preview with NBDF's Phil Gattone
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 learn more. Segment is brought to you by Genentech:
Hemophiliac of Love with Max Feinstein (!!)
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: Takeda, visit bleedingdisorders.com to learn more.
Type 3 vWD, growing up and out with Rick Lindfors
Rick Lindfors is cool. He lives with Type 3 von Willebrand and is in the Minnesota Search and Rescue Dog Association. He sits down with Patrick to chat about how he saw it as an opportunity to give back to his younger self, who, for a time, didn't have anyone coming to rescue them. Listen in to his inspiring story - only on BloodStream! Presenting Sponsor: Takeda, visit bleedingdisorders.com to
Dr. Erik Berntorp (the best-kept secret in vWD) and cancer podcasting legend, Matthew Zachary
Dr. Erik Berntorp (medical doctor, researcher, and professor at Lund University in Sweden) joins us to discuss something special related to von willebrand disease and Matthew Zachary, award-winning Cancer Maverick, Keynote Speaker, and Pioneering Podcaster sits down with Patrick to chat all things advocacy and media! Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Show Not
New Treatment Options and Trials
New treatment options are here for the hemophilia community! Learn more in Patrick's conversation with Craig Benson and our latest Gene therapy segment that focuses on the psychological impact of gene therapy. Plus, we share news about the Genentech and Spark integration. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. It's a Whole New World Gene Therapy Segment brought
Stop the Bleeding!, a retrospective
Stop the Bleeding! is celebrating 14 seasons of using comedy and entertainment to raise awareness and educate about hemophilia and other bleeding disorders. Join creator, director, and star, Patrick James Lynch, in a retrospective with director and writer Jim Fagan as they reminisce about the show's characters and conflicts, and how entertainment & digital media was used to engage, educate, and in
Aging with a Bleeding Disorder
Join us for an episode dedicated to aging with hemophilia, with several stories from our community. We hear from Jeffrey Moualim & Barb Forss, and Patrick sits down with Prisilla Oren, while Hanna chats with Walter Justus. It's a special episode to celebrate the strength of our community. Presenting Sponsor: Takeda, visit bleedingdisorders.com to learn more. Segment is brought to you by Genentec
NBDF CEO weighs in on current events
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 interview with the founder of Hope Runs Red, Breana Si
Medicaid Cuts and vWD Clinical Trials
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. Presenting Sponsor: Takeda, visit bleedingdisorde
New Music from Trevor Martin and info about Deliver Us, an upcoming documentary
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 visionary subjects behind our upcoming documentary Delive
Shakeup at CDC - What does it mean???
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 human. Presenting Sponsor: Takeda, visit bleedingdi
I'm Fine: The Devil You Know
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' and the importance of embracing vulnerability fo
HFA CEO Dan Kelsey & Gene Therapy w Brendan Hayes
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 Podcast It's a Whole New World Gene Therapy
I'm Fine: Honesty & Lies
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 presented by @SanofiUS Please share this survey with
NBDF CEO Phil Gattone + Dr. Nathan Connell on ASH Highlights
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 more. Show Notes: Subscribe: The BloodStream Pod
I'm Fine: The First Fracture
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 challenges. I'm Fine is presented by @SanofiUS Present
Happy Rare Disease Day!
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 Podcast It's a Whole New World Gene Therapy Segm
The wisdom of advocate Corbin Whittington
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 Patient Voice. Presenting Sponsor: Takeda, vis
Dr. Ben Samelson-Jones on Gene Therapy
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 Podcast To learn more about our advocacy dig
Behind the Mystery: Rare and Genetic Diseases
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! Presenting Sponsor: Takeda, visit bleedingdisorders.c
Max Feinsten talks elbow surgery
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 Check out season 14 of Stop the Bleeding!
Jonathan Cappiello is 1 out of 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 BloodStream Podcast It's a Whole New World G
Voices for Policy Change + 2025 HFA Preview with CEO Dan Kelsey
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: Takeda, visit bleedingdisorders.com to learn more.
Gene Therapy Roundtable and Honoring Jess McLean (Page)
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 learn more. Show Notes: Subscribe: The BloodS
NBDF CEO drawing inspiration from local communities
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: Subscribe: The BloodStream Podcast I'm Fine is
The new insurance nightmare you need to know about
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 bleedingdisorders.com to learn more. Show Notes: Subs
International Plasma Awareness Week, y'all!
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! I'm Fine is presented by @SanofiUS Conne
Live at BDC with CEO Phil Gattone!
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 with Janet Brewer from CHES. Presenting Sponsor
Hemophilia Film: What We Wished We Could Be
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 challenges of making the film, Jenna's personal connec
Gene Therapy Reimbursement? We got you covered.
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 Notes: Subscribe: The BloodStream Podcast It'
The Dark Side of High Achievement
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. Plus, Brandon Young and the formation of a rare dise
Clinical Trials, Caregiving, and NEW MUSIC!?
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 of steroids. Additionally, Makenna Dietrich share
The multi-faceted role of HTC social workers
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 Podcast Presenting Sponsor: Takeda, visit bleed
Life with an Invisible Disorder
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 dosing of gene therapy for hemophiia B. Show Note
Mild Hemophilia Matters
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 Elite Athletes with Hemophilia are presente
UK Blood Inquiry Clive Smith & Laurence Woollard
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, visit bleedingdisorders.com to learn more. It
Navigating the Currents: Interferons in the Treatment of Polycythemia Vera
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 with BloodStream Media: BloodStreamMedia.com Blo
On the Shoulders of Giants is a hit (!) and I'm Fine is back
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 Shoulders of Giants Film Watch the movie and host
New NBDF CEO, Phil Gattone
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 BloodStream Podcast Presenting Sponsor: Takeda
Dr. Glenn Pierce on the upcoming WFH Congress + CEO of Plasma Protein Therapeutics Association, Anita Brikman
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 member, Ricardo Ramirez. Show Notes: Subscribe: Th
Highlights from ASH with Dr. Akshat Jain
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 BloodStream Podcast Presenting Sponsor: Takeda,
HFA CEO Dan Kelsey and Rare Disease Day tribute
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 bleedingdisorders.com to learn more. Check out
NBDF welcomes new CEO; HFA responds
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 Presenting Sponsor: Takeda, visit bleedingdisorders.c
Preserving Tainted Blood History and Bath Bleeds
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 Podcast To learn more about the Committee of Ten Thous
Shakeup at HFA and a brand new Gene Therapy segment!
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 gene therapy (whoo!) - all this and more! Show N
SNL screws up sickle cell.
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 episode. Show Notes: Subscribe: The BloodStream Podcast
The World Health Organization (WHO) gets it wrong
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: Subscribe: The BloodStream Podcast Presenting Sponsor: T
The Dark Side of Resilience + The Gratitude Game
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 learn more.
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