Upcoming & Past Events
Run for NARS1 Worldwide 5k
Join The Rory Belle Foundation for our first worldwide 5k!
Support our board members as they run the Boston 5k on April 19th, or gather your friends and family to run your own 5k!
We are raising critical funds for gene therapy creation - a therapeutic that can significantly improve the lives of our individuals affected by NARS1 Disorder.
Donate or create a team here!
Think the best part of any event is the t-shirt? You can order your limited edition official 5k shirt to wear on race day here!
Share your photos and videos from your own 5k by tagging #RunforNARS1.
International Rare Disease Day!
Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.
Check The Rory Belle Foundation social media pages for activities and materials to help raise awareness of rare diseases on this special day!
NARS1 Family Meeting
Join us for a virtual gathering of families impacted by NARS1 disorder! Live interpretation services will be available for all languages. A recording will be available after the meeting, and translated transcripts can be provided to anyone who needs them by request. We hope you’ll come and join us!
Casino Night in Minneapolis
We had an amazing turnout and raised just over $100,000 for research grants. A HUGE thank you to all that participated, sponsored, volunteered, and donated. We couldn't do this without you!
Check out some photos from past events!
