Our “Focus 5” eBook series, in which we share the insights of five thought leaders on a variety of industry topics and trends, has been incredibly well-received, and we’re pleased to issue the latest installment in the series on Rare Disease Research. Patient advocates, researchers and physicians from NORD, Xenon Pharmaceuticals, Landon Pediatric Foundation, Rare Genomics Institute and RareShare.org all weigh in on where we are today and what we can do to help advance research.
It’s a topic we care deeply about. We’ve been guided by patients and patient-centricity since we founded the company more than thirty years ago. We know that putting patients at the center of all research is important, but it’s a principle that guides stakeholders in orphan drug research especially.
Often, those working in rare disease have a deeper understanding of the power of patient centricity. They know firsthand that supporting patients with rare diseases requires a level of intimacy and empathy with the patients and most often with their extended families. And while we may not be able to offer the same level of extensive accommodations for more common conditions, we should all aspire to identify and deliver on the same level of respect and compassion.
We hope you’ll download the eBook, and we hope their words leave you inspired and committed to improved, more patient-centric research.