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NF Network Webinar on Dec. 9 about Patient-Centered Research

Patient Centered Research: What does it mean and how can we bring it to NF?

Join the NF Network on Wed., December 9th at 7:00 PM CST for an all new webinar presented by Vanessa Merker, Senior Clinical Research Coordinator at Massachusetts General Hospital.

Over the past few years, researchers and policymakers have realized that incorporating the patient’s and family members’ preferences and ideas into research leads to more important and more useful discoveries. In fact, in 2011, a new federal agency called the Patient-Centered Outcomes Research Institute was founded to promote research that answers the questions that patients and clinicians face day-to-day.

In this webinar, patient-centered research will be addressed, and how it has grown over the last 5 years. How patient-centered research is developing in the NF community, and what more we can do in the future will also be discussed. Finally, we’ll address ways you can get involved with research, not just as a subject in a study, but as a true patient partner helping brainstorm research questions, improve study design, and sharing results.

Pacific Time – 5:00 p.m.
Mountain Time – 6:00 p.m.
Central Time – 7:00 p.m.
Eastern Time – 8:00 p.m.