Global Hemophilia Report
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Led by science, curiosity, and storytelling, the Global Hemophilia Report is a once-monthly podcast guiding listeners on an audio journey through the foundational and investigative science that is driving the hemophilia experience, globally, right now.
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 Fitusiran. The episode also reflects on the role of treatment individualization and the need for more inclusive research data.
Subscribe to the Global Hemophilia Report: https://bit.ly/ghr_podlink
Contributors:
Johnny Mahlangu, MBBCh, MMed, FCPath
Lynn Malec, MD, MSc
Elisa Mancuso, MD
Steven Pipe, MD
Amy Shapiro, MD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
Featured Advertiser: Sanofi
Radek Kaczmarek, PhD is the Assistant Research Professor of Pediatrics at the Indiana University School of Medicine, shares the patient perspective on the latest Global Hemophilia Report.
Contributors:
Glaivy Batsuli, MD
Bhavya Doshi, MD
David Lillicrap, MD
Carol Miao, PhD
Kathleen Pratt, PhD
Radek Kaczmarek, PhD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
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Kathleen Pratt, PhD is the Professor and Vice Chair for Research, Department of Medicine, Basic Sciences at the Uniformed Services University. Join Dr. Pratt and others on the latest Global hemophilia Report.
Contributors:
Glaivy Batsuli, MD
Bhavya Doshi, MD
David Lillicrap, MD
Carol Miao, PhD
Kathleen Pratt, PhD
Radek Kaczmarek, PhD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
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Carol Miao, PhD is a Professor, of Pediatrics at University of Washington and a Principal Investigator at Seattle Children's Research Institute. She joins the panel on the latest Global Hemophilia Report detailing our current understanding & prevention of FVIII Inhibitors.
Contributors:
Glaivy Batsuli, MD
Bhavya Doshi, MD
David Lillicrap, MD
Carol Miao, PhD
Kathleen Pratt, PhD
Radek Kaczmarek, PhD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
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Exploring the intricacies of immune responses, gene therapy, and novel therapies like emicizumab for FVIII inhibitors on the latest Global Hemophilia Report with panelist, Dr. David Lillicrap, a Professor of Pathology and Molecular Medicine at Queens University.
Contributors:
Glaivy Batsuli, MD
Bhavya Doshi, MD
David Lillicrap, MD
Carol Miao, PhD
Kathleen Pratt, PhD
Radek Kaczmarek, PhD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
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Dr. Bhavya Doshi joins the FVIII inhibitors panel discussion on the latest Global Hemophilia Report. Dr. Doshi is an Attending Physician in the Division of Hematology at Children’s Hospital of Philadelphia.
Contributors:
Glaivy Batsuli, MD
Bhavya Doshi, MD
David Lillicrap, MD
Carol Miao, PhD
Kathleen Pratt, PhD
Radek Kaczmarek, PhD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
Listen, Rate, Review, and Subscribe: https://bit.ly/ghr_podlink
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Join Dr. Glaivy Batsuli, Assistant Professor, Pediatrics, Hematology& Oncology, Stanford University, on the latest episode of the Global Hemophilia Report as Senior Advisor Dr. Donna DiMichele leads a comprehensive discussion on FVIII inhibitors—a critical complication in Hemophilia A.
Contributors:
Glaivy Batsuli, MD
Bhavya Doshi, MD
David Lillicrap, MD
Carol Miao, PhD
Kathleen Pratt, PhD
Radek Kaczmarek, PhD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
Listen, Rate, Review, and Subscribe: https://bit.ly/ghr_podlink
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Join us on the latest episode of the Global Hemophilia Report, where Senior Advisor Dr. Donna DiMichele leads an in-depth discussion on FVIII inhibitors—a critical complication in Hemophilia A. Featuring esteemed experts like Dr. Kathleen Pratt, Dr. David Lillicrap, Dr. Bhavya Doshi, Dr. Carol Miao, Glaivy Batsuli, and Dr. Radek Kazmarek, this episode dives deep into the complexities of immune responses, gene therapy, and innovative treatments such as emicizumab.
Our experts explore key factors including antigen-presenting cells, B cells, T cells, microbiome effects, and glycans that influence inhibitor development and tolerance. Despite the strides made in treatment, they emphasize the continued need for research in understanding and preventing FVIII inhibitors.
Contributors:
Glaivy Batsuli, MD
Bhavya Doshi, MD
David Lillicrap, MD
Carol Miao, PhD
Kathleen Pratt, PhD
Radek Kazmarek, PhD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
Listen, Rate, Review, and Subscribe: https://bit.ly/ghr_podlink
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🩸Hear from influential voices who are making a difference in the hemophilia community. Tune in to understand how patient perspectives are transforming research practices. Listen now 👉 bit.ly/ghr_podlnk_ep30
This episode, "Lived Experience Experts: Taking Their Rightful Place at the Research Table," features discussions with key voices in the hemophilia community. Listen to their stories and insights on why lived experience is crucial in research. Listen now at https://bit.ly/ghr_podlink
Hear from influential voices who are making a difference in the hemophilia community. Tune in to understand how patient perspectives are transforming research practices. Listen now at https://bit.ly/ghr_podlink
In this episode, we delve into the vital contributions of Lived Experience Experts in bleeding disorders research. Our distinguished panel includes Dr. Len Valentino, Kyle Davis, Samantha Carlson, Ray Stanhope, Maria Santaella, and Randy Curtis. Listen now at https://bit.ly/ghr_podlink
On this episode of the Global Hemophilia Report, we're spotlighting Lived Experience Experts and their indispensable role at the research table. Don't miss out on this impactful conversation. Listen now at https://bit.ly/ghr_podlink
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 community experiences.
Contributors:
Len Valentino MD
Samantha Carlson MSW, LMSW
Randy Curtis
Ray Stanhope
Kyle Davis MD
Senior Advisor: Donna DiMichele, MD
Special Episode Advisor: Maria Santaella PhD(c), MSN, RN-BC, CPHON
Hosted & Written by: Patrick James Lynch
Featured Advertiser:
Sanofi
Subscribe to the Global Hemophilia Report
Yasmin Pavri is a caretaker who shares her lived experience on the impact of novel treatment strategies on caregiver burden. Hear her thoughts and more on the latest episode of Global Hemophilia Report. Available now.
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 Advisor: Michelle Witkop, DNP, FNP-BC
Hosted & Written by: Patrick James Lynch
Listen, Rate, Review, and Subscribe: https://bit.ly/3HAZ94f
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Kasha Lumsden is part of a panel discussion on the impact of novel treatment strategies on caregiver burden. Hear her thoughts and more on the latest episode of Global Hemophilia Report. Available now.
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 Advisor: Michelle Witkop, DNP, FNP-BC
Hosted & Written by: Patrick James Lynch
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Contributor Beatriz Caceres is a fellow at The University of North Carolina at Chapel Hill doing a qualitative research project on assessing values and beliefs among Spanish-speaking patients and has done a small storytelling pilot on a caregiver. Hear her thoughts on the latest episode of Global Hemophilia Report. Available now.
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 Advisor: Michelle Witkop, DNP, FNP-BC
Hosted & Written by: Patrick James Lynch
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Kate Khair is the Director of Research at Haemnet and she joins an expert panel discussing the impact of novel treatment strategies on caregiver burden. The latest episode of Global Hemophilia Report available now.
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 Advisor: Michelle Witkop, DNP, FNP-BC
Hosted & Written by: Patrick James Lynch
Listen, Rate, Review, and Subscribe: https://bit.ly/3HAZ94f
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Special Episode Advisor, Michelle Witkop, leads a panel discussion sifting through the data impact of novel treatment strategies on caregiver burden. What do we know and what do we need to know? On the latest Global Hemophilia Report.
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 Advisor: Michelle Witkop, DNP, FNP-BC
Hosted & Written by: Patrick James Lynch
Listen, Rate, Review, and Subscribe: https://bit.ly/3HAZ94f
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Our panel of subject matter and lived experience experts look into caregiver burden, specifically with parents who cared for their children with either severe hemophilia B or severe hemophilia A with an inhibitor before and after a switch to a novel therapy on the latest Global Hemophilia Report.
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 Advisor: Michelle Witkop, DNP, FNP-BC
Hosted & Written by: Patrick James Lynch
Listen, Rate, Review, and Subscribe: https://bit.ly/3HAZ94f
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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 on the latest episode of Global Hemophilia Report. Available Now.
Contributors:
Hazri Aris
Johnny Mahlangu, BSc, MBBCh, MMed, FCPath
Dr Rebecca Mwakichako, MD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
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Hear from Hazri Aris, World Federation of Hemophilia Regional Manager Southeast Asia & Western Pacific, on the latest episode of Global Hemophilia Report about the significance of World Hemophilia Day.
Contributors:
Hazri Aris
Johnny Mahlangu, BSc, MBBCh, MMed, FCPath
Dr Rebecca Mwakichako, MD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
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Dr. Rebecca Mwakichako is a hematologist from Kenya, currently working in Tanzania. Dr. Mwakichako speaks with Patrick from the World Federation of Hemophilia's Congress meeting in Madrid about the significance of World Hemophilia Day.
Contributors:
Hazri Aris
Johnny Mahlangu, BSc, MBBCh, MMed, FCPath
Dr Rebecca Mwakichako, MD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
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Johnny Mahlangu, is a Professor of Haematology at the University of the Witwatersrand and the National Health Laboratory Service in Johannesburg, South Africa. Listen in to the latest Global Hemophilia Report to hear Johnny on the significance of World Hemophilia Day.
Contributors:
Hazri Aris
Johnny Mahlangu, BSc, MBBCh, MMed, FCPath
Dr Rebecca Mwakichako, MD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
Listen, Rate, Review, and Subscribe: https://ow.ly/SEsJ50RrjvR
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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, BSc, MBBCh, MMed, FCPath
Dr Rebecca Mwakichako, MD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
Listen, Rate, Review, and Subscribe: https://bit.ly/3HAZ94f
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Take a deep dive into the world of hemophilia care and the evolution of patient-reported outcomes measures (PROMs). Witness their transition from general quality of life assessments to detailed evaluations of physical abilities, functionality, and emotional well-being.
Listen, Rate, Review, and Subscribe: https://ow.ly/SKxb50R4sr9
Contributors:
Mark Skinner, JD
Brian O’Mahoney
Bradley Rayner
Dawn Rotellini
Mosi Williams, LCSW, MSW, PsyD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
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Join us as we unravel the intricate journey of patient-reported outcomes measures (PROMs) in hemophilia care. Discover how they’ve transitioned from broad quality of life assessments to detailed evaluations of physical abilities and psychological well-being.
Listen, Rate, Review, and Subscribe: https://ow.ly/lOUy50R9mBZ
Contributors:
Mark Skinner, JD
Brian O’Mahoney
Bradley Rayner
Dawn Rotellini
Mosi Williams, LCSW, MSW, PsyD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
Supported through advertising by Sanofi
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. Join us as we unravel the complexities of translating patient-reported clinical outcomes into patient-informed clinical research outcomes.
Contributors:
Mark Skinner, JD
Brian O’Mahoney
Bradley Rayner
Dawn Rotellini
Mosi Williams, LCSW, MSW, PsyD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
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How much do we understand FVIII and FIX proteins in coagulation and how much are we still missing? Join us for a compelling discussion that poses the question: how are FVIII and FIX plasma activity levels being used and interpreted to both predict bleeding risk and develop tailored plans for bleed prevention and treatment?
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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 & Written by: Patrick James Lynch
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Dr. Steven Pipe, MD describes how comprehensive care centers have prepared for educating and supporting the community when it comes to gene therapy on the latest episode of Global Hemophilia Report in a discussion of the hot subject of gene therapy and bleeding disorders. Full episode available now.
Contributors:
Lindsey A. George, MD
Margareth Ozelo, MD
Steven Pipe, MD
Senior Advisor: Donna DiMichele, MD
Hosted by: Patrick James Lynch
Listen, Rate, Review, and Subscribe: https://bit.ly/ghrfb_lg_ag
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