Yes, Women Have Hemophilia: Knowledge Gaps, Diagnostic Delays & the Fight for Equity
Global Hemophilia Report
This episode of the Global Hemophilia Report explores the long-overdue conversation about women with hemophilia. Experts discuss the challenges women face in getting diagnosed, the persistent gaps in clinical research and care, and the impact of outdated language and systemic bias. The panel highlights the need for better data, more inclusive clinical trials, and a shift in medical culture to ensure women with hemophilia are recognized and prioritized. Guests: Michelle Sholzberg MDCM, FRCPC, MSc. Dawn Rotellini Len Valentino, MD Robert Sidonio, Jr., MD Senior Advisor: Donna...
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Hemophilia in the Real World: Patient Engagement in Registries & Data Collection
Global Hemophilia Report
In this episode of the Global Hemophilia Report, host Patrick James Lynch and a panel of experts discuss the importance of real world data and patient engagement in hemophilia care. The conversation explores how data collected outside of clinical trials provides deeper insights into treatment outcomes, challenges, and lived experiences. Guests share strategies for improving data reliability, motivating patient participation, and balancing privacy with research needs. Tune in for key takeaways on how both numbers and personal stories shape better care for the hemophilia community. ...
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I’m Fine. This Is Normal. Old Faithful Works for Me! Mental Health Challenges to Progress
Global Hemophilia Report
On this episode, we explore the concept of shared decision making (SDM) in modern hemophilia care. With insights from experts Brendan Hayes and Dr. Cedric Hermans, the discussion explores the evolution of treatment options, patient education, and the collaborative decision-making process. The conversation also highlights the development and impact of the SDM tool by the World Federation of Hemophilia, emphasizing the importance of patient empowerment and ongoing education. Guests: Kate Bazinsky Randy Curtis Debbie de la Riva Jackie Bottacari Senior Advisor: Donna DiMichele, MD...
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Maybe We’re Not on the Same Page: Shared Decision Making in Hemophilia Care
Global Hemophilia Report
On this episode, we delve into the concept of shared decision making (SDM) in modern hemophilia care. With insights from experts Brendan Hayes and Dr. Cedric Hermans, the discussion explores the evolution of treatment options, patient education, and the collaborative decision-making process. The conversation also highlights the development and impact of the SDM tool by the World Federation of Hemophilia, emphasizing the importance of patient empowerment and ongoing education. Guests: Brendan Hayes, MPH, CPH Senior Advisor: Donna DiMichele, MD Hosted & Written by:...
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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...
info_outlineThis 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 addresses future advocacy strategies and the importance of continuous collaboration at the national and local levels.
Contributors:
Rigo Garcia, Hemophilia Federation of Southern California
Sue Lerch, Great Lakes VE HTC
Sue Martin, Bleeding Disorders Association of South Carolina
Linda Mugford, Hemophilia Association of New York, Inc.
Ray Stanhope, Lone Star Bleeding Disorders Foundation
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
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