Our next in-person NARS1 Gathering, is in Boston, USA from Friday 7th – Sunday 9th August 2026.
The Plan
Friday – Conference Day
We’ll begin with a full-day conference at the hotel, bringing families, researchers, clinicians and The Rory Belle Foundation team together in one place.
Breakfast, lunch and dinner on Friday will be covered by The Rory Belle Foundation.
The day will include foundation updates, an introduction to the science of NARS1, research progress, animal models, ASOs and other topics connected to the future of care and treatment for NARS1 Disorder.
We are also planning updates from members of the research team, either in person or through recorded interviews, so families can hear directly from the people helping to move NARS1 research forward.
Saturday – Family Conversations & Connection
Saturday will begin with a half-day conference in a more relaxed format, with time for panel discussions, family Q&A and shared conversation.
There will also be time for families to connect, share experiences and build relationships with others who understand life with NARS1 Disorder.
Sample collection will be available for families who would like to participate.
In the afternoon, we are planning a Duck Boat Tour of Boston, followed by dinner out as a group.
Sunday – Travel / Free Day
Sunday is a flexible day for travel, departures or informal time together before families head home.
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
If you have RSVP’d and haven’t received the booking link please contact us and we can give it to you.
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.