Running for Rare: A Relay with Purpose
March – June 27, 2026 | Milwaukie, Oregon
As of March in honor of Disability Awareness Month, Running for Rare is more than a training journey — it’s a movement. Over the course of four months, we will train, share stories, build community, and raise critical funds leading up to a powerful relay event on June 26–27, 2026 in Bend.
This endurance relay represents the daily perseverance of individuals and families living with rare diseases. Every mile run symbolizes the resilience, strength, and determination required to navigate diagnoses, treatments, and the unknowns that come with rare conditions.
Why We Run
Rare diseases affect 1 in 10 people, yet many remain underfunded, under-researched, and misunderstood. Running for Rare aims to:
Raise awareness during Disability Awareness Month and beyond
Amplify the voices of the rare disease community
Build inclusive spaces for advocacy and support
Fundraise for Pursuit for PURA, supporting ongoing PURA-research and projects supporting children with disabilities
The Relay: June 26–27, 2026
The journey culminates in a 2-day endurance relay in Bend, Oregon — a team-driven event designed to challenge limits and strengthen bonds. Together, we’ll run through scenic Central Oregon landscapes, carrying with us the stories of families who face marathon-like challenges every single day.
Our Goal
Raise critical funding for PURA research and awareness initiatives
Grow the community surrounding Pursuit for PURA
Turn miles into momentum for meaningful change
Running for Rare is about endurance with intention. It’s about showing up for those who don’t get a break. It’s about turning training into transformation.
Join this movement by sharing a photo and your rare journey to hello@pursuitforpura.org.
Run with purpose. Run for rare. Support us with a donation today.