XCenter: Rare Diseases – Module 4
MODULE 4: Health Equity in Rare Disease: Stories, Data & Solutions
This session will inspire collective action and cross-stakeholder collaboration by understanding barriers to health equity in rare disease patients, including these key topics:
– Why collaboration between patients, providers, advocates, and systems is essential
– Addressing bias and misinformation in rare disease care
– Cultural humility and communication best practices for providers
– Engaging underserved and historically excluded communities
– Examples of community-based and system-level initiatives that work
– How to create meaningful partnerships with rare disease organizations
– What healthcare professionals and advocates can do differently today
Learning Objectives:
- Understand why and how it takes so long to be diagnosed with rare disease and why the journey is different for people of color and families with limited resources
- Why equity matters in rare diseases
- Be able to name and remember examples of diagnostic bias to help ensure advocates are looking for this in a patient’s diagnostic journey
About The Presenter:
Maggie Kang, MD Resilience & Healthcare Coach | TEDx Speaker | Rare Disease Advocate
Dr. Maggie Kang is a Yale-trained physician, certified resilience coach and speaker who empowers people to transform adversity into opportunities for growth and resilience. After navigating her own daughter’s rare disease, Maggie uses her expertise to guide others through challenging events turning life’s disruptions into purpose, connection, and leadership. A passionate advocate and TEDx speaker with nearly 200,000 views, Maggie has reached national audiences through her inspiring talks at the UCLA Luskin Center and the National Organization for Rare Disorders (NORD), and her daughter’s journey has been featured on CBS Evening News. She is also a contributing writer to Psychology Today.