World Hemophilia Day
Global Hemophilia Report
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 Featured Advertiser: Sanofi Subscribe to the Show Notes: Presenting Sponsor: Sanofi Subscribe to the Connect with the Global Hemophilia Report Connect...
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Translating Patient-Reported Clinical Outcomes into Patient-Informed Clinical Research Outcomes
Global Hemophilia Report
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 hemophilia treatment and the patient experience. However, as the landscape of PROMs continues to evolve, discover lingering debates around their sufficiency compared to...
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Understanding Factor VIII & IX - In Coagulation and Beyond - How Much Are We Still Missing?
Global Hemophilia Report
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, France Ben Samuelson -Jones, M.D., PhD; CHOP Research Institute, USA Courtney Thornburg, M.D., MS; Rady Children’s Hospital, UCSD, USA Senior Advisor: Donna DiMichele, MD Hosted...
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Hemophilia Gene Therapy Redux – The End of the Beginning?
Global Hemophilia Report
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. George, MD Margareth Ozelo, MD Steven Pipe, MD Senior Advisor: Donna DiMichele, MD Hosted & Written by: Patrick James Lynch Featured Advertiser: Sanofi Subscribe to...
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PTSD & Hemophilia
Global Hemophilia Report
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: Patrick James Lynch Written by: Simantini Karve, PhD Show Notes: Presenting Sponsor: Sanofi Subscribe to the Connect with the Global Hemophilia Report
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The US National Research Blueprint (NRB)
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 Written by: Simantini Karve, PhD Show Notes: Presenting Sponsor: Sanofi Subscribe to the Connect with the Global Hemophilia Report Connect with BloodStream Media:
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LGBTQ+ Health- Addressing Specific Needs in Comprehensive Hemophilia Care
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 related to LGBTQ+ sexual health. With insights into gender-affirming care, reproductive counseling, and knowledge gaps, we provide a comprehensive perspective tailored for physicians and clinicians...
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Sexual Health- An Unaddressed Need in Comprehensive Hemophilia Care
Global Hemophilia Report
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 Maureen Baldwin, MD William McKeown, MD Senior Advisor: Donna DiMichele, MD Hosted by: Patrick James Lynch Written by: Simantini Karve, PhD Show Notes: Presenting...
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Mild Hemophilia A: A Misnomer?
Global Hemophilia Report
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.) Fijnvandraat MD PhD Maria Elisa Mancuso, MD PhD Michael Recht, MD PhD MBA Vaughn Ripley Senior Advisor: Donna DiMichele, MD Hosted by: Patrick James Lynch Written by: Simantini...
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Telemedicine for the Care of Hemophilia: What Do We Gain And What Do We Lose?
Global Hemophilia Report
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 hemophilia care Contributors: Sativa Rangarajan, Associate Professor of Clinical Haematology Michelle Witkop, DNP, FNP-BC Dr. Roshni Kulkarni, Professor &...
info_outlineProduced by: Believe Limited & BloodStream Media
Hosted by: Patrick James Lynch
Senior Advisor: Dr. Donna DiMichele
Featured Advertiser: Sanofi Genzyme
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