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Enhancing Collaboration for Patient-Centered Care in Rare Diseases

A panel of experts discuss improving collaboration between health systems and managed care organizations to ensure optimal outcomes for patients with rare diseases.

This is a video synopsis/summary of a Peer Exchange involving Ryan Haumschild, PharmD, MS, MBA; Jessica Nance, MD, MS; Kimberly C. Chen, DO, MSHLM; Emma Ciafaloni, MD, FAAN; and Mary Pak, MD, FACP.

Haumschild moderates a comprehensive dialogue addressing the importance of collaboration in health care decision-making. Pak emphasizes the need for inclusive discussions involving researchers, clinicians, payers, and manufacturers to navigate the complexities of treatment access and affordability. Ciafaloni highlights the remarkable advancements in gene therapies and the imperative of data sharing to drive continued progress. Chen underscores the significance of identifying the right patients and fostering cooperation to enhance access and quality of care. Nance expresses gratitude for platforms facilitating such discussions and emphasizes the vital role of communication in navigating rapid changes in health care. The panelists collectively stress the importance of equitable access, efficacy, and collaboration in driving patient-centered care forward. Haumschild concludes by acknowledging the audience’s role in benefiting from and contributing to these essential discussions.

Video synopsis is AI-generated and reviewed by AJMC® editorial staff.

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