Welcoming NARS1 France
When a family receives a NARS1 diagnosis, geography should never determine the support they can access, the research they can contribute to, or whether their clinicians have heard of the condition.
That belief has always been at the heart of The Rory Belle Foundation. Today, we are proud to share an important step forward for our global community: the launch of NARS1 France.
We fully support this step and are proud of the families who made it happen. This is not a split. It is not a change in direction. It is what progress looks like.
Families in France have come together to form their own national association, working alongside us toward a shared mission: accelerating research, improving understanding, and supporting families affected by NARS1-related disorders.
Why a French association matters
For ultra-rare conditions like NARS1, progress depends on collaboration. But in some countries, having a recognised national association can also make practical things easier.
In France, NARS1 France will be able to apply for research grants, engage directly with local clinicians and research teams, and build formal partnerships within the French healthcare and research system.
These steps strengthen the work we are all doing together.
They will help create new opportunities, build important clinical relationships, and add momentum to the international research effort already underway.
Working together for the same mission
NARS1 France will operate as an independent French association, but in close partnership with The Rory Belle Foundation.
We have signed a Memorandum of Understanding, which sets out how we will work together with openness, trust, and a shared purpose.
Our mission remains exactly the same: to accelerate and fund research, ensure access to exceptional care, and build a strong community that connects families on their journey.
Together, we will continue to support families, share resources, improve understanding of NARS1-related disorders, and help advance research.
What this means for families
For families, this simply means more support, more connection, and more opportunity.
Everything families need, including resources, research updates, family support, and reminders about key initiatives, will continue to be shared through our website and community channels.
Some families may connect directly through NARS1 France. Others may continue to come through The Rory Belle Foundation. Many will do both.
However families find us, they will be part of the same global community.
A growing global community
NARS1-related disorders are ultra-rare, but our community is growing stronger.
Every new connection matters. Every family that comes forward helps build understanding. Every clinician, researcher, and advocate who joins this work brings us one step closer to answers.
We are so proud to welcome NARS1 France and excited for what we can achieve together.
This is another step forward for NARS1 families, in France, across Europe, and around the world.