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conferenceseries
.com
Volume 04
Journal of Clinical Infectious Diseases & Practice
ISSN: 2476-213X
Rare Diseases Congress 2019
June 17-18, 2019
June 17-18, 2019 | Berlin, Germany
9
th
World Congress on
Rare Diseases and Orphan Drugs
Ensuring patient centricity in rare disease drug development
Jennifer Mcnary
Fierce advocate, USA
P
atient centricity is an often used but not always executed strategy in the current drug development landscape. It is
known that patients and their caregivers are key stakeholders and potentially hold the greatest expertise in their
own diseases; it is the responsibility of drug makers to enlist the help of these individuals to help ensure a successful
pathway from pre-clinical development to the global market. During this presentation author will use her 17 years
of experience as a caregiver to two rare disease patients and professional work as an Advocate and Consultant
to demystify the concept of ensuring patient centricity in the rare disease drug development space. Participants
should expect the following to be achieved: Exploring timelines and methods for seeking patient input into the
drug development process at every stage, including endpoint selection, clinical trials, regulatory and commercial
development; Learning best practices for working with patient, caregivers and advocacy groups to ensure a mutually
beneficial relationship; Identification of ways to support and encourage the patient communities in your disease
space; Development of strategies to tackle access issues within patient communities both pre and post drug approval.
Jenn@JMcNaryconsulting.comJ Clin Infect Dis Pract 2019, Volume 04