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:...
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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...
info_outlineJoin 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
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