Jennifer Mcnary
Rare Diseases Advocate, USA
Title: Ensuring patient centricity in rare disease drug development
Biography
Biography: Jennifer Mcnary
Abstract
Patient 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 session I will use my 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.
Objectives: 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.