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Wednesday, June 26 • 2:00pm - 3:15pm
#358: Improving the Trial Experience for Rare Disease Patients: Identifying and Overcoming Obstacles

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Component Type: Workshop
Level: Intermediate
CE: ACPE 1.25 Application UAN: 0286-0000-19-697-L04-P; CME 1.25; IACET 1.25; RN 1.25

Participants will engage in an “overcoming obstacles” activity designed to encourage collaboration among rare disease patients, trial sponsors, and advocates. You will identify obstacles to trial participation and work to develop creative solutions.

Learning Objectives

Describe valuable and detailed input from patients on clinical trial design; Design patient interactions that encourage collaboration among patients, sponsors, and advocacy group; Explain how to optimize clinical trials to ensure they meet the needs of rare disease patients.


Kelly Franchetti, RN


Patient Perspective
Kim Stephens, PhD, MA

Industry Perspective
Kelly Franchetti, RN

Academic Perspective
Ellyn Getz

avatar for Kelly Franchetti

Kelly Franchetti

Vice President, Global Head Patient Insights and Engagement, ICON plc
Kelly Franchetti has a diverse background comprised of nursing, patient advocacy and clinical research. This broad range of experiences gives her a unique view of patients’ and caregiver’s perspectives in the realm of disease management and treatment. As a critical care nurse... Read More →
avatar for Ellyn Getz

Ellyn Getz

Associate Director, Development and Community Engagement, CISCRP
Ellyn Getz is the Associate Director of Development and Community Engagement at CISCRP. She is responsible for directing CISCRP’s educational and outreach initiatives, including AWARE for All: Clinical Research Education Days, MT Pharmacy and Journey to Better Health mobile experiential... Read More →
avatar for Kim Stephens

Kim Stephens

President, Project Alive - Hunter Syndrome
Dr. Kim Stephens is the President of Project Alive, a nonprofit organization whose mission is to cure Hunter Syndrome/Mucopolysaccharidosis II through research and advocacy. Having a son with Hunter Syndrome herself, this is also a personal mission for Dr. Stephens. Dr. Kim Stephens... Read More →

Wednesday June 26, 2019 2:00pm - 3:15pm
Room 9 San Diego Convention Center 111 W Harbor Drive, San Diego, CA 92101 USA