Events
Upcoming Rory Belle Foundation Events
Events Calendar
Use our events calendar to see what’s coming up across the Rory Belle Foundation and the wider rare disease community. From our own events to global awareness days, you’ll also find opportunities to attend events local to you — helping raise awareness, connect with others, and be part of the progress.
If you think that there is an event missing from our calendar or you would like to attend an event on behalf of The Rory Belle Foundation, please let us know.
Check out some photos from past events!
Run for NARS1 - Worldwide 5km
Wherever you are in the world, you can take part.
On April 18th, our community will once again come together for the Rory Belle Foundation Worldwide 5km — raising vital funds to accelerate research, improve understanding, and move us closer to treatments for NARS1 disorder.
Boston Family Gathering
RSVP Today - We’re excited to share that early planning is underway for our next in-person NARS1 Family Gathering, which we’re hoping to hold in Boston, USA from Friday 7th – Sunday 9th August 2026.