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The Advocacy of Hope: The Voices Behind Our Insights
May 7 @ 9:30 AM - 10:15 AM
Jeff Leider, President/ Founder of the Let Them Be Little X2 Foundation & Patient Representative to the FDA
Nadia Bodkin, PharmD, Founder of EDSers United & Rare Advocacy Movement (RAM)
Neena Nizar, EdD, Founder/Executive Director, Jansen’s Foundation
Leslie Rogers, Developmentally Disabled Community Advocate
Christopher Missling, PhD, President/CEO Anavex Life Sciences
Florian Eichler, MD, Associate Professor of Neurology, Massachusetts General Hospital & Harvard Medical
As insight professionals, we spend weeks or months collecting data, analyzing it, gleaning every possible insight only to hit “send,” project done. A few pats on the back go around and then we’re on to the next project. We may never know the true impact of our work. We aspire to and often wonder if our hard work has made a difference. Particularly, when working in rare and life-threatening diseases, we know that peoples’ lives are in the balance. We hope our research rippled into their lives and possibly “gave them hope.”
For the first time ever, Intellus will bring together patient advocacy leaders, scholars, and pharma executives for a keynote session that is guaranteed to give us answers the insight community desperately seeks. Nadia Bodkin, Pharm.D., M.S, founder EDSers United Foundation, along with other patient advocacy leaders, will give us a rare peek into living with and advocating for rare diseases. “Hope,” as Nadia says, “will keep us alive.” This unique opportunity to share the experiences of seasoned leaders and experts from within the rare disease community will help us, the insights community, to better understand how we can leverage patient perspectives and collaborative efforts to improve and save rare lives.
This exciting keynote will set the stage for round table discussions led by our speakers and industry executives. The round tables will give members a unique chance to engage with leaders, put forth ideas and take action. From drug discovery to patient programs, each round table will bring to light the impact of our research on the lives of patients and their caregivers.