Rare Disease Day 2025
Navigating Rare Disorders: Insights from Lived Experience
Thursday, March 6, 2025
Attend in-person or virtually
McNamara Alumni Center (200 Oak St SE, Minneapolis MN)
Keynote speakers
Stephanie Tomlinson
Co-Chair of the Undiagnosed Diseases Network Foundation PEER team
The Rare Parent: A Journey of Hope, Guilt, and (Occasionally) Crying in the Car
Haley Brunelle
Family Engagement in Research Coordinator, Gillette
CEO, Team Felix Neptune
Podcast co-host, Rarely Familiar
When Life Give You Lemons, Make Apple Juice: Using Lived Experience to Transform Systems Chang
Kathleen Bogart, PhD
Professor of Psychology and Director of the Disability and Social Interaction Lab at Oregon State University
Navigating the Unknown: Mental and Physical Health Disparities in Rare Disorders