Swapna will share her 33-year experience with the healthcare system living with a rare, GI, chronic disease. She will reflect on what the patient with chronic disease(s) values, focusing on both her successes and challenges interacting with healthcare providers across the country at difference care facilities. Patients and caregivers want to be heard, respected, and valued in their own care. As a result, the audience will gain insight on how to empower clinicians and learn what is important to patients & families affected by chronic & rare diseases. Attendees will be motivated through actionable steps to become a champion in delivering care and education that is inclusive of the patient & family voice. In this session we will:
Learning Objectives:
Learn the gaps & successes in delivery of healthcare for individuals and families affected by rare and chronic diseases
Feel confident in educating clinicians on what individuals affected by rare disease value in their healthcare
Reflect on how important and timely constant and continuous education is in order to survive with rare disease(s)
