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Wednesday, June 21 • 10:30am - 11:45am
#321: Engagement, Education, Networks, Media, and Societies in Rare Diseases: The MUST Haves

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Component Type: Session
Level: Intermediate
CE: ACPE 1.25 Knowledge UAN: 0286-0000-17-543-L04-P; CME 1.25; IACET 1.25; RN 1.25

Patient networks, patient engagement and education is critical to patients' involvement in clinical trials. This plays out through social media and patient networks to disseminate information about opportunities more rapidly through a much broader audience. Due to the limited number of potential subjects , the contribution of multiple medical groups to a given trial necessitates the development of physician/patient networks as an integral part of the recruitment process. Societies are instrumental in disseminating , demystifying and educating patients about clinical trial opportunities which can assist in recruiting, retention and conducting these trials.

Learning Objectives

Describe and discuss communication pathways and approaches between key stakeholders in the development of rare disease therapies


Scott Douglas Schliebner, MPH


A Mutually Beneficial Partnership: Engaging Advocacy and Patient Groups to Assist with Clinical Trial Recruitment
Kelly Franchetti, BSN, RN

Engaging the Rare Disease Patient Voice Through Social Media, Social Listening, and Online Communities
Scott Douglas Schliebner, MPH

Leveraging Referring Physician Networks for Rare Disease Research
Bonnie A. Brescia

Utilizing the Power of Many to Direct the Development of the Few: The Entrepreneurial Scope of the New Generation of Scientists Tasked With Developing Rare Disease Therapies
Dan Tierno, MA, MBA

avatar for Scott Schliebner

Scott Schliebner

Senior Vice President, Center for Rare Diseases, PRA Health Sciences
Scott Schliebner is a clinical strategist with a 20+ year background in clinical development specializing in rare diseases and orphan drug development. His experience encompasses all trial phases; a broad variety of study designs; interventional and observational studies; across a... Read More →

avatar for Bonnie Brescia

Bonnie Brescia

Founding Principal, Corporate Planning Officer, BBK Worldwide
Bonnie A. Brescia has been a leader in patient recruitment and engagement for more than 35 years. Widely recognized for helping to shape the patient recruitment discipline and a preeminent voice for patient centricity, her insights regarding the global clinical research community... Read More →
avatar for Kelly Franchetti

Kelly Franchetti

Vice President, Global Patient Insights and Engagement, Patient Centered Science, Mapi Group, An ICON plc Company
Kelly Franchetti, RN, CCRN, CEN, is the VP of Global Patients Insights and Engagement at Mapi/ICON. Kelly has nearly two decades of direct patient experience, gained in both hospital and industry settings including CROs, healthcare technology, patient research, and hands-on patient... Read More →
avatar for Dan Tierno

Dan Tierno

Associate Director, Global Clinical Data Sciences and Analytics, Bayer
Mr. Dan Tierno has over 20 years of experience in the pharmaceutical and biotech industry, specializing in drug development, data sciences and analytics for clinical trials, and commercialization of novel small molecule and cell based therapeutics. Mr. Tierno has spoken on training... Read More →

Wednesday June 21, 2017 10:30am - 11:45am CDT
S503ab McCormick Place 2301 South Martin Luther King Jr. Drive, Gate 4 Chicago, IL 60616
  07: SpecialPops, Session