Our next in-person NARS1 Family Gathering, is in Boston, USA from Friday 7th – Sunday 9th August 2026.
Accommodation & What’s Included
The gathering will be held at The Royal Sonesta in Cambridge, and all rooms will be booked centrally by The Rory Belle Foundation. We’ll be covering the following for each family:
Accommodation for Thursday, Friday and Saturday nights (one room per family, based on up to 4 people)
All meals on Friday and Saturday
Breakfast on Sunday
A family activity/outing on Saturday
The Plan
Friday – Conference Day
A day to come together as a community. We’ll hear research updates, learn more about NARS1, share family stories and spend time with clinicians and researchers.
Saturday – Casual Family Day
A relaxed day focused on connection. Time to meet other families, talk, share experiences and build relationships at your own pace. Sample collection from families who want to participate.
Sunday – Travel / Free Day
Flexible departure or informal time together.
Research Participation Opportunity
This gathering will also provide an optional opportunity for families to provide biological samples for research.
We are intentionally selecting a venue with appropriate facilities so that this can be done in a safe and supportive environment for those who wish to take part.
The more samples we are able to collect — particularly across a wide range of NARS1 variants — the more powerful our research becomes. These samples help researchers:
Develop potential biomarkers
Better understand how different variants function
Test potential therapeutics in the lab
Participation will always be entirely voluntary, and we will share more detailed information well in advance.
Language & Accessibility
Full translation services will be available throughout the event to support our non-English speaking families. We want this gathering to feel inclusive and accessible to our entire global community.