Welcome to TBL1XR1 Around the World

Connecting Families. Advancing Research. Building Community.

A diagnosis of a TBL1XR1-related disorder can feel overwhelming and isolating. Many families are told that only a small number of individuals worldwide share the same condition.

But you are not alone.

TBL1XR1 Around the World is a global community map created to help families, caregivers, clinicians, researchers, and advocates connect across borders. Every pin represents an individual, a family, a journey, and a story.

By adding your family to the map, you help us build a stronger worldwide network, increase awareness, support future research efforts, and make it easier for newly diagnosed families to find others who understand their experience.