New eBook: Rare Disease Research. What’s Next?

New eBook: Rare Disease Research. What’s Next?

Posted by BBK

guide-rare-disease-research-whats-next.pngNearly a year ago, we released our first guide on rare disease clinical research. In it, we were looking to address some important questions facing the people who are committed to improving the lives of patients with rare disorders. While much progress has been made, it is critical that those of us in the health care and life sciences industry remain keenly aware of all that’s being done to further research and improve outcomes. In our latest eBook, “Focus 5: Rare Disease Research. What’s Next?” we reached out to industry experts for their insights on this evolving clinical research landscape.

Highlights include:

  • Roberta Carson, Founder and President of Zaggo, Inc., a national nonprofit devoted to empowering patients and families to be more engaged, shares her experiences as a caregiver and offers advice on what the industry can do to make study participation easier on patients and families.
  • Pamela Gavin, Chief Operating Officer at the National Organization for Rare Disorders (NORD), shares her insights on the need for sponsors to understand and collaborate with rare disease patients, and why it is essential for researching rare and orphan diseases.
  • Chris Landon, pediatric pulmonologist, and Founder and CEO of Landon Pediatric Foundation, shares his thoughts on rare disease research and treatments, the progress we’ve made, and the ways in which all stakeholders can align to improve study patient care and communications.
  • John Boland, Vice President of Product Development at Atlantic Research Group, offers insights on how sponsors can overcome the challenges inherent to researching rare disorders.

Download the eBook here and let us know what you think. If you’d like more information on rare and orphan disease research, follow us on Twitter @bbkworldwide.


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Topics: Patient Recruitment, Patient Engagement, Rare Disease, Clinical Research