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Engagement, Education, Networks, Media, and Societies in Rare Diseases: The MUST Haves
Session Chair(s)
Scott Schliebner, MPH
Senior Vice President, Clinical Development Services
TFS Health Science, United States
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 Objective : Describe and discuss communication pathways and approaches between key stakeholders in the development of rare disease therapies
Speaker(s)
A Mutually Beneficial Partnership: Engaging Advocacy and Patient Groups to Assist with Clinical Trial Recruitment
Kelly Franchetti, RN
Savvy Cooperative, United States
Global Head- Growth and Insights
Engaging the Rare Disease Patient Voice Through Social Media, Social Listening, and Online Communities
Scott Schliebner, MPH
TFS Health Science, United States
Senior Vice President, Clinical Development Services
Leveraging Referring Physician Networks for Rare Disease Research
Bonnie Brescia
BBK Worldwide, United States
Chief Development Officer
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
Daiichi Sankyo, Inc, United States
Associate Director, Project and Portfolio Management
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