Breaking Barriers: Transforming Rare Disease Patient Engagement
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Breaking Barriers: Transforming Rare Disease Patient Engagement
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This is Part 1 of a 2-part series exploring the challenges rare disease patients face in accessing care, influencing policy, and making their voices heard.
In this episode, we explore how healthcare leaders, researchers, and advocates are working to break down barriers and build meaningful engagement strategies. Featuring insights from Adrian Kielhorn, a leader in economic research at Alexion, AstraZeneca Rare Disease, and Charlene Son Rigby, CEO of Global Genes, we discuss the financial burdens rare disease patients face, the role of industry collaboration, and how trust and transparency can drive better patient outcomes. Tune in to discover innovative approaches that empower patients and shape the future of rare disease care.
Join the Center on Wednesday, March 19, 2025 for the 6th Annual Methods Summit for a deep dive into patient-centered value research. Register now:
On-Site: https://ow.ly/sUoE50UGr3c
Live-Stream: https://ow.ly/xCuy50UGr3a