Global Hemophilia Report

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...

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 pati...

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 del...

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 scie...

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 NBD...

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the challenges women face in getting diagnosed, the persistent gaps in clinical research and care, and the impact of outdated language and systemic bias.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 ensu...

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, motiv...

On this episode, we explore the concept of shared decision making (SDM) in modern hemophilia care. With insights from experts Brendan Hayes and Dr. Cedric Hermans, the discussion explores the evolution of treatment options, patient education, and the collaborative decision-making process. The conversation also highlights the development and impact of the SDM tool by the World Federation of Hemophi...

On this episode, we delve into the concept of shared decision making (SDM) in modern hemophilia care. With insights from experts Brendan Hayes and Dr. Cedric Hermans, the discussion explores the evolution of treatment options, patient education, and the collaborative decision-making process. The conversation also highlights the development and impact of the SDM tool by the World Federation of Hemo...

On this episode of the Global Hemophilia Report, we discuss the limitations of current hemophilia care metrics. They explore the importance of measuring the impact on quality of life, the role of nurse-patient relationships, and the challenges faced by underrepresented patient groups, such as those with moderate hemophilia and women.    Guests: Brittany Savage, NP Cathy Harrison, RN, Adv Dip, BMed...

On this episode of the Global Hemophilia Report, we explore the critical topic of health literacy and its direct impact on health equity within the bleeding disorders community. Featuring insights from experts, the discussion highlights the urgent need to address gaps in health literacy to ensure better medical outcomes. The episode also examines the challenges posed by recent rollbacks of diversi...

On this episode of the Global Hemophilia Report, we speak with guests who are each pioneering hemophilia advocacy in their respective regions. The discussion highlights the pivotal role of data and patient storytelling in driving systemic change and policy advancements. The episode emphasizes how global collaboration and technological innovations are paving the way for more equitable hemophilia ca...

On this episode of the Global Hemophilia Report, host Patrick James Lynch and Senior Advisor Dr. Donna DiMichele review significant discussions from the season on therapeutic advancements, patient advocacy, and critical hematological research. They highlight key topics explored, such as the evolving therapeutic landscape, the role of data and patient involvement in advancing hemophilia care, and t...

The comprehensive care model for hemophiliathe is experiencing transformative evolution. Our panel of esteemed experts highlight how data and innovation are driving change across the globe, and share their insights on the challenges and advancements in advancing specialized care for individuals with hemophilia.   Contributors: Amy Dunn, M.D. Sanjay Ahuja, M.D.  Cedric Hermans, M.D.,  Ph. D., FRCP...

This episode of the Global Hemophilia Report podcast explores the significance of grassroots advocacy within hemophilia associations and chapters, emphasizing the critical role of data in advancing advocacy efforts. Experts from various U.S. organizations discuss the historical impact of the 1980s blood contamination crisis and the evolution of advocacy through its challenges and triumphs. The con...

On this episode we talk with experts Dr. Amy Shapiro, Dr. Maria Elisa Mancuso, Dr. Steve Pipe, Dr. Johnny Mahlangu, and Dr. Lynn Malec to delve into the ongoing evolution of hemophilia therapies. The discussion highlights recent advancements in treatments such as emicizumab, extended half-life factor VIII therapies, and investigates medications in clinical trials like Concizumab, Marstacimab, and...

On this episode of the Global Hemophilia Report, Senior Advisor Dr. Donna DiMichele leads a comprehensive discussion on FVIII inhibitors—a critical complication in Hemophilia A. The episode features experts such as Dr. Kathleen Pratt, Dr. David Lillicrap, Dr. Bhavya Doshi, Dr. Carol Miao, and Dr. Radek Kazmarek who explore the intricacies of immune responses, gene therapy, and novel therapies like...

In this episode of the Global Hemophilia Report, we delve into the crucial role of Lived Experience Experts (LEEs) in hemophilia research. Featuring a distinguished panel, the discussion covers the evolution, importance, and future of LEE involvement in research. The episode emphasizes the pivotal contributions of LEEs in making research more relevant and impactful, driven by personal and communit...

Our panel of subject matter and lived experience experts engage in a data-driven discussion about caregiver burden in hemophilia, historically, and how the rapidly evolving treatment landscapes impacts that burden. Contributors: Michelle Witkop, DNP, FNP-BC Kate Khair, PhD Beatriz Caceres, MD Kasha Lumsden, BSN, RN, RAC-CT Yasmin Pavri    Senior Advisor: Donna DiMichele, MD   Special Episode Advis...

On this episode of the Global Hemophilia Report, host Patrick James Lynch is on location in Madrid, Spain for the WFH 2024 World Congress. Patrick talks about the history of World Hemophilia Day and talks with some of the attendees at the congress. Contributors: Hazri Aris Johnny Mahlangu Rebecca, Hematology Resident   Senior Advisor: Donna DiMichele, MD   Hosted & Written by: Patrick James Lynch...

In this episode, delve into the transformative journey of patient-reported outcomes measures (PROMs) within hemophilia care, exploring their evolution from broad assessments of health-related quality of life to nuanced evaluations of physical ability, functionality, and psychological impact. Learn about pioneering instruments like the Hemo-TEM and the PROBE questionnaire, designed to capture the m...

The topic of discussion for this episode leans more toward the scientific side but has huge clinical relevance. For today, we will be asking our expert panel to lend their experience and expertise to the topic of FVIII and FIX, which we will be discussing from several related perspectives.    Contributors: Radek Kaczmarek, PhD, MSc; University of Indiana, USA Peter Lenting, PhD; INSERM, Paris, Fra...

Gene therapy for hemophilia A and B now exists as a licensed, prescribable treatment option for patients in certain countries; however, many questions and challenges remain. Senior advisor Dr. Donna DiMichele and patient-host Patrick James Lynch speak to global KOLs about the current state of hemophilia A and B gene therapies, both commercially and investigationally.   Contributors: Lindsey A. Geo...

Join us as we shed light on the often-overlooked intersection of Post Traumatic Stress Disorder (PTSD) and Hemophilia, discussing innovative treatments, personal stories, and the journey towards understanding and managing these complex disorders.   Contributors: Stephen W. Porges, PhD Debbie de la Riva Amanda Stahl, MSW, LICSW Justin Levesque   Senior Advisor: Donna DiMichele, MD   Hosted by: Patr...

The US National Research Blueprint (NRB). Thriving in the Face of an Inheritable Bleeding Disorder Begins with Community-Inspired Research.    Contributors: Len Valentino, MD Keri Norris, MD Maria Santaella, MD Michael Recht, MD Sammie Valadez Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch Written by: Simantini Karve, PhD   Show Notes: Presenting Sponsor: Sanofi   Subscribe t...