Global Hemophilia Report

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

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...

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...

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...

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...

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...

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

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...

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 ...

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...

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:

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:

...

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...