Breaking Barriers: Transforming Rare Disease Patient Engagement

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The Value Brief

The Center for Innovation and Value Research

6 episodes

3 days ago

Dedicated to advancing patient-centered outcomes, healthcare equity, and transparency in value-based care. Through conversations with healthcare leaders, researchers, and patient advocates, we explore how innovative strategies and collaborative efforts can drive meaningful change in healthcare decision-making. Each episode tackles issues like ensuring fair access to care, improving transparency in healthcare research, and amplifying patient voices. By sharing expert insights and real-world applications, The Value Brief fosters critical discussions that shape the future of healthcare.

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Medicine

Health & Fitness

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Breaking Barriers: Transforming Rare Disease Patient Engagement

The Value Brief

21 minutes 3 seconds

8 months ago

Breaking Barriers: Transforming Rare Disease Patient Engagement

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:
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