Chapters & Grassroots Advocacy
09/27/24 • 52 min
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 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
Featured Advertiser:
Subscribe to the Global Hemophilia Report
Show Notes:
Connect with the Global Hemophilia Report
Global Hemophilia Report on LinkedIn
Global Hemophilia Report on Twitter
Global Hemophilia Report on Facebook
Connect with BloodStream Media:
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 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
Featured Advertiser:
Subscribe to the Global Hemophilia Report
Show Notes:
Connect with the Global Hemophilia Report
Global Hemophilia Report on LinkedIn
Global Hemophilia Report on Twitter
Global Hemophilia Report on Facebook
Connect with BloodStream Media:
Previous Episode
The Evolving Landscape of Novel Therapies for Hemophilia: What’s Here & What’s Coming?
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, MSc
Elisa Mancuso, MD
Steven Pipe, MD
Amy Shapiro, MD
Senior Advisor: Donna DiMichele, MD
Hosted & Written by: Patrick James Lynch
Featured Advertiser:
Subscribe to the Global Hemophilia Report
Show Notes:
Connect with the Global Hemophilia Report
Global Hemophilia Report on LinkedIn
Global Hemophilia Report on Twitter
Global Hemophilia Report on Facebook
Connect with BloodStream Media:
Next Episode
The Future of the Comprehensive Care Model
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:
Subscribe to the Global Hemophilia Report
Show Notes:
Connect with the Global Hemophilia Report
Global Hemophilia Report on LinkedIn
Global Hemophilia Report on Twitter
Global Hemophilia Report on Facebook
Connect with BloodStream Media:
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