Biography
Biography: Jennifer Mcnary
Abstract
Understanding the patient and caregiver journey is an important first step when tackling rare disease drug development. Through my personal experience raising two boys with Duchenne muscular dystrophy, I will lead the audience into the world of those living with rare disease. Our story is not unique, patients and caregivers don’t often have a background that is ideal to enable them to become experts in the areas needed to advocate for themselves and their family members, but there is no more motivated person to do so.
Objectives:
The audience should gain a deeper understanding from the viewpoint of those living with and caring for rare disease patients. Through storytelling, the audience will become engaged in and experience a renewed motivation to serve the populations they work for.
Topics discussed will include:
- Caregiver/family burden
- Diagnostic journey
- Clinical trial experience
- Advocacy
- Regulatory
- Access
- Financial considerations