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. Click here to add your family to the TBL1XR1 Around the World map!
In May 2024, Fly Little Bird Foundation held its first ever in-person 2-day event in Boston for families, caregivers, and the patient community affected by TBL1XR1 gene variants. Over a dozen families from around the world attended to meet each other, see Dr. Amanda Nagy in clinic, and attend a full day of presentations focused on TBL1XR1-related disorder and the issues faced by our children and their families. Speakers included Dr. Nagy, pediatric neurologist at Massachusetts General Hospital; Dr. Christina Sakai, developmental pediatrician at Massachusetts General Hospital; and Blyth Lord, Founder of the Courageous Parents Network.
