Are We Measuring the Right Stuff?
Global Hemophilia Report
On this episode of the Global Hemophilia Report, we discuss the limitations of current hemophilia care metrics. They explore the importance of measuring the impact on quality of life, the role of nurse-patient relationships, and the challenges faced by underrepresented patient groups, such as those with moderate hemophilia and women. Guests: Brittany Savage, NP Cathy Harrison, RN, Adv Dip, BMedSci, MSc Senior Advisor: Donna DiMichele, MD Hosted & Written by: Patrick James Lynch Featured Advertiser: Subscribe to the Show Notes: ...
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Health Literacy is Health Equity, and It Matters
Global Hemophilia Report
On this episode of the Global Hemophilia Report, we explore the critical topic of health literacy and its direct impact on health equity within the bleeding disorders community. Featuring insights from experts, the discussion highlights the urgent need to address gaps in health literacy to ensure better medical outcomes. The episode also examines the challenges posed by recent rollbacks of diversity, equity, and inclusion policies and presents innovative solutions being utilized to bridge these gaps. Guests: Kerry Funkhouser, EdD Brendan Hayes, MPH, CPH Paula James, MD Magdalena...
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Global Advocacy at the Organizational Level
Global Hemophilia Report
On this episode of the Global Hemophilia Report, we speak with guests who are each pioneering hemophilia advocacy in their respective regions. The discussion highlights the pivotal role of data and patient storytelling in driving systemic change and policy advancements. The episode emphasizes how global collaboration and technological innovations are paving the way for more equitable hemophilia care worldwide. Guests: Harshal Kale, World Federation of Hemophilia Matthew Delaney, National Bleeding Disorders Foundation Megan Adediran, Hemophilia of Nigeria Senior Advisor:...
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What We've Learned - Season 3
Global Hemophilia Report
On this episode of the Global Hemophilia Report, host Patrick James Lynch and Senior Advisor Dr. Donna DiMichele review significant discussions from the season on therapeutic advancements, patient advocacy, and critical hematological research. They highlight key topics explored, such as the evolving therapeutic landscape, the role of data and patient involvement in advancing hemophilia care, and the persisting challenges in treatment, particularly for hemophilia B patients. The episode also addresses the impact of artificial intelligence in research and the importance of securing funding for...
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The Future of the Comprehensive Care Model
Global Hemophilia Report
The comprehensive care model for hemophiliathe is experiencing transformative evolution. Our panel of esteemed experts highlight how data and innovation are driving change across the globe, and share their insights on the challenges and advancements in advancing specialized care for individuals with hemophilia. Contributors: Amy Dunn, M.D. Sanjay Ahuja, M.D. Cedric Hermans, M.D., Ph.D., FRCP Jan Blatný, M.D., Ph.D Suely Rezende, M.D., Ph.D Senior Advisor: Donna DiMichele, MD Hosted & Written by: Patrick James Lynch Featured Advertiser: ...
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Chapters & Grassroots Advocacy
Global Hemophilia Report
This episode of the Global Hemophilia Report podcast explores the significance of grassroots advocacy within hemophilia associations and chapters, emphasizing the critical role of data in advancing advocacy efforts. Experts from various U.S. organizations discuss the historical impact of the 1980s blood contamination crisis and the evolution of advocacy through its challenges and triumphs. The conversation highlights the importance of data collection, transparency, and community engagement in sustaining and enhancing treatment and support for those affected by hemophilia. The episode also...
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The Evolving Landscape of Novel Therapies for Hemophilia: What’s Here & What’s Coming?
Global Hemophilia Report
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. Contributors: Johnny Mahlangu, MBBCh, MMed, FCPath Lynn Malec, MD,...
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Understanding & Preventing FVIII Inhibitors : An Enduring HA Research Priority
Global Hemophilia Report
On this episode of the Global Hemophilia Report, Senior Advisor Dr. Donna DiMichele leads a comprehensive discussion on FVIII inhibitors—a critical complication in Hemophilia A. The episode features experts such as Dr. Kathleen Pratt, Dr. David Lillicrap, Dr. Bhavya Doshi, Dr. Carol Miao, and Dr. Radek Kazmarek who explore the intricacies of immune responses, gene therapy, and novel therapies like emicizumab. They delve into factors like antigen-presenting cells, B cells, T cells, microbiome effects, and glycans that influence inhibitor development and tolerance. Despite advancements in...
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Lived Experience Experts: Taking Their Rightful Place at the Research Table
Global Hemophilia Report
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...
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Caregivers and Novel Therapies - Alleviating or Replacing Concerns?
Global Hemophilia Report
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 Senior Advisor: Donna DiMichele, MD Special Episode Advisor: Michelle Witkop, DNP, FNP-BC Hosted & Written by: Patrick James Lynch Featured Advertiser: Sanofi Subscribe to the Show Notes: Presenting Sponsor:...
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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