Global Hemophilia Report

BloodStream Media
BloodStream Media
  • 5.0 (10)
  • Medicine
  • Updated Monthly

Led by science, curiosity, and storytelling, the Global Hemophilia Report from BloodStream Media is an entertaining monthly journey through the investigations and science driving hemophilia research around the world. Produced by: Believe Limited & BloodStream Media Hosted by: Patrick James Lynch Senior Advisor: Dr. Donna DiMichele Featured Advertiser: Sanofi Genzyme #GHRpod #hemophilia #clinicalresearch #bloodstreammedia

  1. 6d ago ·  Video

    The Research Ecosystem Behind Hemophilia Breakthroughs: Funding, Mentorship, and Collaboration

    Host Patrick James Lynch and co-host Dr. Donna D. Micheli frame hemophilia progress as the product of sustained collaboration and investment, not inevitability, amid an increasingly uncertain research environment. Joined by University of Michigan physician-scientist and HTRS president Jordan Shavit, University of Washington professor and bleeding disorders center director Rebecca Kruse-Jarres, and HTRS executive director Lorilyn Jacobsen-Tews, they discuss momentum in gene therapy, non-factor and longer-acting factor options, and emerging ideas like oral therapies, alongside a broader, more inclusive focus across bleeding disorders. The panel highlights shrinking federal funding, the growing importance of professional societies and foundation support, and mentorship pipelines that attract and retain investigators from student to mid-career stages. They emphasize patient partnership in defining meaningful outcomes and express optimism rooted in community, collaboration, and the long arc of scientific progress.   Guests: Lorilyn Jacobsen-Tews Executive Director, Hemostasis and Thrombosis Research Society (HTRS) Rebecca Kruse-Jarres, MD Professor of Medicine and Pediatrics, University of Washington Executive & Medical Director, Washington Center for Bleeding Disorders Jordan Shavit, MD, PhD Physician-Scientist & Professor of Pediatrics and Hematology, University of Michigan    Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes: Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on X/Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter

    The Research Ecosystem Behind Hemophilia Breakthroughs: Funding, Mentorship, and Collaboration

  2. Jun 18 ·  Video

    WFH 2026: Spotlight on Humanitarian Aid

    At the World Federation of Hemophilia World Congress in Kuala Lumpur, thousands gathered to discuss the future of bleeding disorders care. Gene therapies. Rebalancing agents. Artificial intelligence. New possibilities seemed to be everywhere. But beneath the excitement, one question echoed throughout the meeting: who still gets left behind? In this episode of the Global Hemophilia Report, Patrick Lynch sits down with Believe Limited's Amy Board, WFH Humanitarian Aid Director Assad Haffar, and Sanofi's Bonnie Anderson to explore the promises of innovation, the realities of global inequity, and the humanitarian efforts working to close the gap. From breakthrough science to life-changing access programs, this conversation examines what "Treatment for All" really means in 2026. Guests: Amy Board – Director, Engagement and Programs, Believe Limited Assad Haffar – WFH Humanitarian Aid Director Bonnie Anderson –  Head of Humanitarian Aid, Rare Diseases at Sanofi   Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report Show Notes:   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on X/Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter

    WFH 2026: Spotlight on Humanitarian Aid

  3. Apr 23

    Rebalancing Agents and Other Available Treatment Options

    The hemophilia treatment landscape is evolving faster than ever. In this episode of Global Hemophilia Report, Patrick James Lynch and Dr. Donna DiMichele are joined by Drs. Hermans, Carpenter, and Hansen to break down the emerging class of rebalancing agents—therapies that don't replace clotting factor, but target new parts of the coagulation cascade. We explore what these treatments mean for patients, clinics, and shared decision-making around the world. Key takeaways include the urgent need for real-world data, better patient education, and the potential for new therapies to protect joint health in ways never seen before. Tune in to hear expert insights, practical considerations, and the future of hemophilia care. Guests: Dr. Cedric Hermans, MD, - Hemophilia Centre,  Saint-Luc University Hospital, Brussels  Dr. Shannon Carpenter, MD - Pediatric Hematology, Kansas City Hemophilia Center: CJ Hansen BSN, RN - Nurse Coordinator & Program Manager,  OSU Comprehensive Cancer Center, Patient Advocate   Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes:   The Bigger Picture in Hemophilia B:  Hemophilia A and hemophilia B are different bleeding disorders with unique pathologies and clinical features.1 Due to the distinct behavior of factor IX, multiple PK parameters should be considered when assessing bleed prevention. Learn how a broader view of PK may influence evaluation of treatment and management for patients with hemophilia B.2,3 Learn more at thebiggerpictureinhemb.com  1. Castaman G, Matino D. Haematologica. 2019;104(9):1702-1709. 2. Dolan G, Benson G, Duffy A, et al. Blood Rev. 2018;32(1):52-60.  3. Mann DM, Stafford KA, Poon M-C, Matino D, Stafford DW. Haemophilia. 2021;27(3):332-339.   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on X/Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter

    Rebalancing Agents and Other Available Treatment Options

  4. Feb 26

    The Future of Comprehensive Care

    This season opener explores comprehensive hemophilia care in 2025: what's working, what's strained, and what needs to evolve. Clinicians from the US, UK, and Ireland join host Patrick James Lynch and Dr. Donna DiMichele to discuss treatment personalization, shared decision-making, psychosocial burden, and global sustainability challenges. Guest Megan Iditarod from Nigeria offers perspective on delivering comprehensive care with limited resources, highlighting the universal need for multidisciplinary support and good data collection.   Guests: Megan Iditarod Kate Khair, PhD Amy Dunn, MD Prof Niamh O'Connell, MB PhD   Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes:   #MyHemophiliaTruth. Real stories. Powered by Sanofi. It's time to consider the whole experience when it comes to managing hemophilia and change the conversation. Explore the full story at www.myhemophiliatruth.com   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on X/Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter

    The Future of Comprehensive Care

  5. 11/20/2025

    40 Years in Hemophilia

    In this special episode, host Patrick James Lynch reflects on turning forty…and on forty years of life with hemophilia. Joined by Dr. Donna DiMichele, Patrick traces the parallel evolution of his own experience and the hemophilia community's journey through crisis, discovery, and innovation. From the HIV epidemic of the 1980s to the arrival of gene therapy and digital health, they explore how science, data, and humanity have shaped the story of hemophilia. Together, they ask: what have we learned, what still can't be measured, and what might the next forty years hold? Guests: Donna DiMichele, MD   Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes:   Join Kevin as he shares about his journey with hemophilia and the hurdles he faced in communicating with friends, family, and healthcare providers about his condition. He highlights how hemophilia affects far more than just physical health — and why honest, open conversations that focus on the full patient experience, not just symptoms, are so essential.   Click here to watch his story: https://www.youtube.com/watch?v=3v1cCTbhClA&list=PLmqBxf22n4lNK82h3QZ-9YlpIjYdzDOer&index=5   Rich's Story Join Rich as he discusses how hemophilia has impacted his ability to travel and live an active lifestyle. He highlights how hemophilia affects far more than just physical health and shares his journey of overcoming barriers to be able to safely travel internationally, fly fish, garden, and more.    Click here to watch his story: https://www.youtube.com/watch?v=ihEvFywE43E&list=PLmqBxf22n4lNK82h3QZ-9YlpIjYdzDOer&index=8   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on X/Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter

    40 Years in Hemophilia

  6. 09/25/2025

    There's Nothing New for Me in the Pipeline (Clinical Trials & Patient Participation)

    In this episode, we take a deep dive into the state of the treatment pipeline for bleeding disorders. From the way clinical trials are structured to what's actually available for different conditions, we examine both the promise and the reality of innovation in this space. Recorded live at the NBDF Bleeding Disorders Conference, we join Mike Recht, MD, PhD, Chief Science and Medical Officer of NBDF, for a "research posters walk & talk" to explore what's happening right now — and why so many promising treatments never make it to market. Guests: Mike Recht, MD, PhD Maria Santaella, PhD(c), MSN, RN-BC, CPHON Samantha Carlson, LMSW   Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch   Written by: Kay Vermeil   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes:   Join Kevin as he shares about his journey with hemophilia and the hurdles he faced in communicating with friends, family, and healthcare providers about his condition. He highlights how hemophilia affects far more than just physical health — and why honest, open conversations that focus on the full patient experience, not just symptoms, are so essential.   Click here to watch his story: https://www.youtube.com/watch?v=3v1cCTbhClA&list=PLmqBxf22n4lNK82h3QZ-9YlpIjYdzDOer&index=5   Sanofi's Global Hemophilia Survey uncovers significant care gaps and emotional challenges faced by patients and caregivers. Learn how improving health literacy and fostering better patient-provider communication are essential to addressing these inequities. Explore the findings and see how Sanofi is driving health equity for the hemophilia community. Explore the survey findings here: Global Hemophilia Survey Page. Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on X/Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter

    There's Nothing New for Me in the Pipeline (Clinical Trials & Patient Participation)

  7. 08/28/2025

    Yes, Women Have Hemophilia: Knowledge Gaps, Diagnostic Delays & the Fight for Equity

    This episode of the Global Hemophilia Report explores the long-overdue conversation about women with hemophilia. Experts discuss the challenges women face in getting diagnosed, the persistent gaps in clinical research and care, and the impact of outdated language and systemic bias. The panel highlights the need for better data, more inclusive clinical trials, and a shift in medical culture to ensure women with hemophilia are recognized and prioritized.    Guests: Andra James, MD, MPH Michelle Sholzberg MDCM, FRCPC, MSc. Dawn Rotellini Len Valentino, MD Robert Sidonio, Jr., MD   Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch   Written by: Kay Vermeil   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes:   Presenting Sponsor: Presented by Sanofi Join Shellye as she shares her inspiring journey as a woman living with hemophilia. After years of unanswered questions, her diagnosis highlights the critical role of health literacy in bridging care gaps. Through advocacy, Shellye raises awareness and empowers underserved communities. Watch her story and see how health literacy can break barriers and transform lives. Click here to watch her story: Sanofi – See Hemophilia Through My Eyes: Women & Girls For too long, women and girls who bleed have been dismissed. Left out of the narrative. Ignored by the system. But not anymore. In our new film, "Dismissed," meet Isabelle—a 15-year-old with hemophilia who's using her voice to uplift the unheard. Alongside her are four powerful stories of women challenging what's "normal" and demanding recognition, care, and justice. This is more than a film. It's a movement. 📽️ Watch and share the trailer now. Learn more at http://dismissedfilm.com/   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on X/Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter

    Yes, Women Have Hemophilia: Knowledge Gaps, Diagnostic Delays & the Fight for Equity

  8. 07/31/2025

    Hemophilia in the Real World: Patient Engagement in Registries & Data Collection

    In this episode of the Global Hemophilia Report, host Patrick James Lynch and a panel of experts discuss the importance of real world data and patient engagement in hemophilia care. The conversation explores how data collected outside of clinical trials provides deeper insights into treatment outcomes, challenges, and lived experiences. Guests share strategies for improving data reliability, motivating patient participation, and balancing privacy with research needs. Tune in for key takeaways on how both numbers and personal stories shape better care for the hemophilia community.   Guests: Mike Recht, MD, PhD, MBA Samantha Gouw, MD, PhD Maria Santaella, RN-BC, MSN, PhD(c)   Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch   Written by: Kay Vermeil   Featured Advertiser: Sanofi   Subscribe to the Global Hemophilia Report   Show Notes:   Presenting Sponsor: Presented by Sanofi   Sanofi's Global Hemophilia Survey uncovers significant care gaps and emotional challenges faced by patients and caregivers. Learn how improving health literacy and fostering better patient-provider communication are essential to addressing these inequities. Explore the findings and see how Sanofi is driving health equity for the hemophilia community. Explore the survey findings here: Global Hemophilia Survey Page. For too long, women and girls who bleed have been dismissed. Left out of the narrative. Ignored by the system. But not anymore. In our new film, "Dismissed," meet Isabelle—a 15-year-old with hemophilia who's using her voice to uplift the unheard. Alongside her are four powerful stories of women challenging what's "normal" and demanding recognition, care, and justice. This is more than a film. It's a movement. 📽️ Watch and share the trailer now. Learn more at http://dismissedfilm.com/   Connect with the Global Hemophilia Report Global Hemophilia Report on LinkedIn Global Hemophilia Report on X/Twitter Global Hemophilia Report on Facebook   Connect with BloodStream Media: BloodStreamMedia.com BloodStream on Facebook  BloodStream on X/Twitter

    Hemophilia in the Real World: Patient Engagement in Registries & Data Collection
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Led by science, curiosity, and storytelling, the Global Hemophilia Report from BloodStream Media is an entertaining monthly journey through the investigations and science driving hemophilia research around the world. Produced by: Believe Limited & BloodStream Media Hosted by: Patrick James Lynch Senior Advisor: Dr. Donna DiMichele Featured Advertiser: Sanofi Genzyme #GHRpod #hemophilia #clinicalresearch #bloodstreammedia

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