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.
Westminster Health Forum: Rare Diseases in England Policy Conference
This conference will consider next steps for rare diseases policy in England.
It will be an opportunity for stakeholders and policymakers to discuss priorities emerging from the Department of Health and Social Care’s recently published England Rare Diseases Action Plan 2026.
The Translational Science of Rare Diseases Symposium
This symposium focuses on cutting-edge insights from basic and clinical science and their translation into the development of novel therapeutic strategies.
2026 Scientific Symposium "Treatment of rare diseases: from research to patients"
"Treatment of rare diseases: from research to patients." Explore optimal preclinical models, therapeutic innovations, and post-treatment challenges.
ECRD 2026 (Prague & Online) - Conference on Rare Diseases
The European Conference on Rare Diseases & Orphan Products (ECRD) is the largest patient-led policy-shaping event on rare diseases in Europe.
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.
2nd European Congress on Rare Diseases & Orphan Drugs
This two-day event uniting researchers, clinicians, industry leaders, policymakers, and patient advocates from across the globe.
World Epilepsy Day
Wear purple on 26th March to show your support for those with epilepsy. More information - https://purpleday.org/
A Night at the Market for The Rory Belle Foundation
Tickets are on sale now for our annual Fall Gala Fundraiser! This year we are bringing the party to Detroit to visit Sophie Wait and family
Grab your dancing shoes and join us in Downtown Detroit on November 7th for a fun night of entertainment for a great cause - NARS1 disorder research.
Visit our event site for all of the details and information, as well as to purchase tickets before prices go up October 1st!
We can’t wait to see you there!
Slinging Suds @ Hogshead Brewery
Join Rachel at Hogshead Brewery in Denver! $1 from the purchase of all beers go directly to the Rory Belle Foundation to support our mission!
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!
