Why relationships are key in rare disease patient engagement

May 2021

Xperiome CEO, Jeremy Edwards, speaks to Pharmaphorum about how addressing the unmet needs of rare disease patients means thinking beyond individual studies

Real-world data is a vital part of rare disease drug development, but to get a true picture of patients’ unmet needs pharma should take a broader view of their lived experiences, says Xperiome’s Jeremy Edwards.

It is difficult to get data on rare diseases and the people who live with them by their very nature. But these patients face unique challenges in their everyday lives that pharma needs to account for when developing treatments, and understanding these challenges requires strong real-world data. Jeremy Edwards, CEO of Xperiome, believes that bringing patients from across different rare disease areas together will allow pharma to get a better picture of how they can truly address unmet needs.

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