Where stories and progress come together
This space is dedicated to the voices that shape the rare disease community. Here, you’ll find personal stories, shared experiences, and on-demand content from events like Rally for Rare — all reflecting the moments, challenges, and breakthroughs that move rare disease forward.
Rally for Rare 2026: A New Chapter on Capitol Hill
On February 26, 2026, Rally for Rare will return to Washington, D.C. as part of EveryLife’s Rare Disease Week with an Advocacy Day Launchpad. This dedicated space will serve as a home base for advocates to connect, prepare for meetings with Members of Congress, and stay informed through a live Senate hearing screening. Thanks to partners like Worldwide, all events remain free—ensuring access never limits advocacy.
Upcoming Events
Rare Moments
We live for the rare moments.
Rare Moments is a collection of personal stories and perspectives from across the rare disease community. From lived experiences to moments of progress and hope, each story reflects what rare disease means to those closest to it.
Past Events
Looking back at the moments that brought our community together
Revisit presentations, videos, and highlights from previous rare disease events that brought the community together around shared experiences and meaningful conversations.
What Rare Means to Us
Hear directly from members of the rare disease team as they share what rare disease means to them.
Our Rare Disease Experts
Amy Raymond, PhD, PMP
Executive Director, Therapeutic Strategy Lead, Rare Disease & Cellular and Genetic Medicines
Additional Resources
How Worldwide and Every Cure Are Using AI To Unlock New Rare Disease Treatments
Insights
Meet Your Rare Disease Team
Fact Sheet
Rare Disease Day
rarediseaseday.org
