Global Hemophilia Report

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   

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   

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   

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   

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