Articles and publications

Our latest insights and news on rare disease, and how we’re helping drive change through clinical research.

Rare Disease Patients Overlooked During COVID

Xperiome CEO Jeremy Edwards shares the findings from our latest rare disease survey with Applied Clinical Trials

Why relationships are key in rare disease patient engagement

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

Solve rare disease study recruitment challenges by engaging with patients early

Could early audience insight be the answer to the recruitment challenge in rare disease?

Advertising Digitally for Rare Disease Clinical Trials in the 21st Century

We look at how sponsors can best utilize digital advertising channels to help shorten recruitment timelines

Community building empowers rare-disease patients: Xperiome

Jeremy 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

Reflections on 2020 and the future of rare disease research

Our CEO Jeremy Edwards shares his reflections on 2020, as well as his hopes for the year ahead

Recent data shows positive attitudes for decentralized trials in rare disease patients

Jeremy Edwards, our CEO, discusses the findings from our clinical trial opinions survey and what they mean for pharma in the Applied Clinical Trials publication

Report: Clinical trial opinions in rare disease

Results from our 2020 survey reveal drivers and barriers to clinical trial participation

Video: How do people living with rare diseases feel about clinical trials in 2020?

Faced with the pandemic, the patient community overwhelmingly recognizes the benefits of a decentralized approach to clinical trials

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