Global Hemophilia Report

Global Hemophilia Report

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

Episodes

May 30, 2024 40 mins

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 

 

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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

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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 multifaceted burdens of...

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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; I...

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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....

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December 28, 2023 54 mins

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

 

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November 30, 2023 59 mins

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

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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 related to LGBTQ+ sexual...

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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, Physiotherapis...

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August 31, 2023 52 mins

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...

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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 rise of telehealth in h...

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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.

 

C...

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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

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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 equation– but exactly, ho...

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March 23, 2023 42 mins

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 ...

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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 Dola...

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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:

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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:

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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, M...

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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 childre...

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