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.

At this stage, we’re asking families to RSVP to help us understand likely numbers and plan accordingly. Please click the 'RSVP' button to let us know who is attending.

Please do not book flights or accommodation yet, we will confirm full details and provide as much notice as possible before any travel arrangements need to be made.

What we’re currently planning

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.

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.

Boston Family Gathering - August 2026

By The Rory Belle Foundation

Boston Family Gathering - August 2026

RSVP Now Open