A warm and honest story from the Anderson family, sharing life with NARS1 through the eyes of James, currently the oldest known member of the NARS1 community. From a diagnosis that took nearly 30 years to moments of joy found in hockey games, music and community, this story reflects both the challenges and the deep love that shape life with a rare condition.

Read the Lo Re family’s story, they have shared honestly of Gabriels difficulties since birth, but they don’t let this stop them. A heart warming story that will resonate with many.

Explore the inspiring story of the Jenson family as they navigate life with Talan, their son living with NARS1 Disorder. From early challenges to community support, learn how they find joy, routine, and hope every day.

Families, researchers, and clinicians came together in Croatia for the first-ever Rory Belle Foundation Family & Researcher Gathering on NARS1 Disorder.