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
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Show Notes:
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