Community building empowers rare-disease patients: Xperiome
February 2021Jeremy Edwards, CEO of Xperiome, spoke with Outsourcing-Pharma about the unique challenges rare disease patients and researchers face, and how connecting the two groups can benefit both in many ways
Outsourcing-Pharma interviewed Xperiome CEO, Jeremy Edwards, to learn more about what we do and how connections with patients can boost research
OSP: What gaps and unfulfilled needs in treatments and the healthcare system rare-disease patients find themselves in that your company seeks to address?
JE: The nature of rare diseases – the fact that individual diseases have small populations and are not as well researched as common diseases - means that rare disease patients and their caregivers face many challenges. They can struggle for years to get a proper diagnosis. Once they finally get a diagnosis, information can be challenging to find, leaving patients and caregivers with knowledge gaps and unanswered questions. We’re working with patients, parents, and caregivers to build a knowledge bank of their lived experiences. We’re empowering them to raise their voices, pool their wisdom to support others, and help the industry understand what it’s like to live with a rare disease. Where are the gaps, and what areas they need support? As part of that journey, we’re providing an opportunity for patients to take part in research. We’re connecting researchers to the right data, the right insights, and the right people for their studies. By bringing patients closer together with those studying rare diseases, we help pave the path to better treatments and even cures.
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