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Guest Spotlight: Improving Patient Engagement

By BBK on Thu, May 5, 2016

For this week’s Guest Blog Spotlight and in recognition of Clinical Trials Awareness Week, we’re sharing insights on improving patient engagement from Rare Genomics Institute and Rareshare.org, and contributors to our recent Rare Disease eBook. We asked Rare Genomics CEO Paul Schindler, Director of Strategic Alliances Nolin Huddleston, and Rareshare.org’s Head of Operations and Development Alice Cheng, “How can sponsors take a more active role in building and supporting rare disease communities?”

Topics: Patient Engagement, eBook, Rare Disease, Rare Disease Research

Guest Spotlight: Genetics and Discovery in Rare Disease Research

By BBK on Fri, Apr 29, 2016

“We know today that we can define the root cause of genetic diseases. We have a growing toolkit with which to we can aggressively tackle and modify the underlying defect, which ultimately I believe will lead to benefits for the patients, improving their quality of life, and potentially for some, it may lead to cures.”

Topics: eBook, Rare Disease, Rare Disease Research

Guest Spotlight: Appreciating Every Patient’s Experience

By BBK on Tue, Apr 26, 2016

“When so many rare disease patients commit themselves to becoming experts of their condition, sponsors must also strive to understand and collaborate with the patients they wish to engage.”


Topics: eBook, Rare Disease, Rare Disease Research

New eBook: Industry Insights on Rare Disease Research

By BBK on Tue, Apr 12, 2016



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.

Topics: Patient Centricity, Rare Disease, clinical trials, Rare Disease Research

 

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