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Tuesday, June 25 • 10:30am - 11:30am
#237: The Rare Disease Experience in Clinical Trials

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Component Type: Session
Level: Intermediate
CE: ACPE 1.00 Knowledge UAN: 0286-0000-19-596-L04-P; CME 1.00; IACET 1.00; RN 1.00

This session will provide a look at the rare disease patient’s experience, and provide professionals with insight on how to craft accessible trials that meet this patient population’s needs. The session will also focus on the importance of increasing the number of rare disease trials throughout the industry.

Learning Objectives

Discuss how the rare disease patient’s experience differs from those suffering from more common indications, and ways in which it is the same.


Steven L. Roberds, PhD


No Two Patients Are the Same: The Rare Disease Experience in Clinical Trials
Christian Burns

Isabelle Lousada, MA

avatar for Steven Roberds

Steven Roberds

Chief Scientific Officer, Tuberous Sclerosis Alliance, United States
Steve leads the development and execution of the TS Alliance's scientific strategy through partnerships and conversations with stakeholders including individuals and families affected by TSC, basic and clinical researchers, healthcare providers, government agencies, and other non-profit... Read More →
avatar for Christian Burns

Christian Burns

President, ClinEdge
Christian, an avid entrepreneur and research advocate, is the President & co-founder of ClinEdge & BTC. He is passionate about serving patients and sites by identifying innovative solutions that will transform the traditional clinical trial model. ClinEdge & BTC work directly with... Read More →
avatar for Isabelle Lousada

Isabelle Lousada

Chief Executive Officer and President, Amyloidosis Research Consortium, United States
As a former patient, Lousada has spent 20 years dedicated to patient advocacy, accelerating drug development, and promoting awareness of rare diseases. Lousada founded the Amyloidosis Research Consortium (ARC) in 2015 to address the critical needs in clinical trials and related research... Read More →

Tuesday June 25, 2019 10:30am - 11:30am PDT
Room 2 San Diego Convention Center 111 W Harbor Drive, San Diego, CA 92101 USA
  06: PreClin Dev-EarlyPhaseCR, Session