Global Hemophilia Report

In this episode, we address the critical intersections of LGBTQ+ health and hemophilia care. Delving into the historical links with the HIV crisis, we scrutinize the disparities in care access, the mental health implications, and the unique challenges faced during transition to independent care. We discuss the intricacies of prophylactic drug regimens, vaccines, and the hemophilic bleeding risk re...

On this episode, we will address defining sexual health and its importance to hemophilia care, best practices and standards for addressing sexual health, implementing a practice of addressing sexual health into a comprehensive care model, envisioning progress in care models for addressing sexual health in both global and personalized ways and more.    Contributors: Greig Blamey, Physiotherapist Ma...

Persons with mild hemophilia have been shown to experience more bleeding - related morbidity than previously recognized while achieving lifespans that parallel the general population. Consequently, persons living with mild hemophilia are more likely to experience the comorbidities associated with aging, often complicating their management in their later years.    Contributors: Prof Karin (C. J.) F...

Telehealth options are assumed to provide added benefit to providers and patients alike, but how much do we really know and understand about telemedicine? Listen in to the latest episode of Global Hemophilia Report as our contributors share how telemedicine has potentially benefited and detracted from hemophilia care across different populations as well as what research must still be done on the r...

The social determinants of health (SDH) are the non-medical factors that influence health outcomes. They are the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life. These forces and systems include economic policies and systems, development agendas, social norms, social policies and political systems.   Contr...

Historically, camps for kids with hemophilia have played a specific and valuable role, enabling a young person with hemophilia to experience all the benefits of a traditional, summer camp experience. On this episode, we dig into the camp experience with some of the leading voices within the space.  Contributors: Tracey Gaslin PhD, CPNP, FNP-BC, CRNI, RN-BC Michael Wang, MD Pat Torrey Sarah Shinkma...

Historically, people with hemophilia and especially children, have lived with considerable limitations when it comes to engagement in sports and athletics, thereby missing out on the numerous biopsychosocial and general health. However, both advancements in hemophilia care/treatment and advancements in understanding the benefits of engaging in sports have significantly changed the risk/benefit equ...

On this episode we're in conversation with research leaders to learn more about the current state of hemophilia research, the barriers and opportunities we're facing today, and what the future of hemophilia research might look like.     Contributors: Flora Peyvandi, MD, PhD Keith Hoots, MD Len Valentino, MD Michelle Witkop, DNP, FNP-BC Glenn Pierce, MD, PhD   Senior Advisor: Donna DiMichele, MD  ...

There has been a remarkable increase in the life expectancy of persons living with  hemophilia (PLWH) over the past century, largely due to access to safe factor replacement products.  However, the course of progress has been uneven, and rocky, for many. This is part two of our series on Aging with Hemophilia. Contributors: William McKeown, MD Randall Curtis Gerry Dolan, MD, MBChB, FRCP, FRCPath B...

There has been a remarkable increase in the life expectancy of persons living with  hemophilia  (PLWH) over the past century, largely due to access to safe factor replacement products.  However, the course of progress has been uneven, and rocky, for many.   Contributors: William McKeown, MD Randall Curtis Gerry Dolan, MD , MBChB, FRCP, FRCPath Barbara Konkle, MD   Senior Advisor: Donna DiMichele,...

Renowned hematologist, researcher, and senior advisor to the Global Hemophilia Report Dr. Donna DiMichele shares some of her Season 1 takeaways and thoughts about the future of hemophilia research. Senior Advisor: Donna DiMichele, MD   Hosted by: Patrick James Lynch   Show Notes: Presenting Sponsor: Sanofi   Subscribe to the Global Hemophilia Report Listen to BloodStream's Journey to Joint Health...

On this episode, we continue our discussion of chronic pain in hemophilia. We'll discuss exercise, medication and investigations.   Contributors: Nathalie Anne Roussel, PhD, MSc, PT Paul Mc Laughlin,  BSc, MSc, MMACP   Senior Advisor: Donna DiMichele, MD   Episode Advisors (also contributors): Michelle Witkop, DNP, FNP-BC Tyler Buckner, MD   Hosted by: Patrick James Lynch   Show Notes: Presenting...

According to the Centers for Disease Control, pain is one of the most common reasons people seek medical care. However, for persons affected by hemophilia A and B, the experience of pain has provided the subtext for many issues related to health and wellbeing across the lifespan, and irrespective of gender, age, and, potentially, hemophilia severity levels. Although less-well characterized in chil...

In Part 2 of our Hemophilia B episode, we spotlight research priorities into women with hemophilia B, novel therapies to treat people with hemophilia B, and we conclude the story of Alexei Nikolaevich, the last Tsesarevich of Russia.   Contributors: Bethany Samuelson Bannow, MD Brian O'Mahony Kathaleen M. Schnur, MSW, LCSW   Senior Advisor: Donna DiMichele, MD   Episode Advisors (also contributors...

Hemophilia B is a rare inherited X-linked disorder characterized by a congenital anomaly in the factor IX gene leading to a variable deficiency in clotting factor IX. In this episode, we explore the known differences between Hemophilia B and Hemophilia A and discuss priority areas for further research into Hemophilia B. The episode also guides listeners on an entertaining journey through 19th and...

On this episode, Executive Producer of the Global Hemophilia Report , Patrick James Lynch, is joined in person by Senior Advisor, Dr. Donna DiMichele, and Writer/Host, Laurence Woollard, to reflect on Season 1 so far as well as debate existing and emerging research priorities from each episode. Contributors: Patrick James Lynch Laurence Woollard Donna DiMichele, MD   Senior Advisor: Donna DiMichel...

Women, girls, and those with the potential to menstruate (WGPPM) who live with hemophilia, have more difficulty getting a diagnosis and accessing adequate care than their biological male counterparts. But why? What research is underway to support the needs of these individuals? This episode takes a wide-lens approach to exploring the socio-cultural barriers and gender-related challenges facing WGP...

In March 2022, a Washington Post article highlighted children and adolescents in the US experiencing a mental health crisis, but how does a hemophilia diagnosis further complicate a young person's mental wellbeing? What data exists to support interventions? This episode explores the state of research and understanding of hemophilia's impact on a young person's mental health.   Episode Advisors: Dr...

Even with the introduction of prophylaxis, the goal of achieving perfect bone and joint health for patients with hemophilia through normalizing homeostasis remains elusive. In this episode, we cover the current monitoring and detection strategies and explore the investigational work that's aimed at enhancing existing tools, validating suspected tools, and discovering entirely new ones.     Episode...

Prophylaxis in hemophilia has led to extraordinary progress, however, recent studies suggest that although the overall musculoskeletal health of persons with hemophilia has significantly improved, the goal of attaining a level of musculoskeletal health comparable to that of the general population without hemophilia has still not been achieved. Furthermore, the impact of prophylaxis has been uneven...

Gene therapy, hemostatic rebalancing therapies, memetic therapies, and even factor replacement therapy are all currently being explored in clinical trials, but while these therapies are paving the way to historical treatment ease and efficacy, they are also sweeping the hemophilia community into uncharted territory of potentially new challenges that must be addressed. This episode explores the cur...

Inhibitor development has long been considered the most significant complication of severe hemophilia, but with the licensure of the first non-factor therapy and a robust pipeline of novel and gene therapeutics being investigated, is it still of critical importance that we better understand inhibitors? If so, what research is currently taking place, and what can he hope to learn from it? This epis...

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 #clinicalre...