Welcome to the seventeenth edition of the rare disease newsletter. A few months has changed the world of clinical research into a very different place. This issue includes a summary of work PRA has done to understand the impact of COVID19 on the rare disease patient community and to rare disease research.
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Blog
Creating Patient-Centric Trials and Technology for a Better Patient Experience
To commemorate this year’s Patient Experience Week—which celebrates healthcare staff impacting patient experience and provides a focused time for…
White Paper
The Patient Voice: Engaging Rare Disease Patients Improves Clinical Trial Enrollment & Retention
Clinical trials in rare diseases are complex and present unique challenges. However, patients in these trials are very vocal, with caretakers, family…
Page
Amy Raymond, PhD, Director of Therapeutic Expertise, Center for Rare Diseases
We measure our HQ with actions, experiences, and intentions. Nowhere is that more evident that in the stories of our subject matter experts. We want…