You Are Not Alonein This Journey
Hundreds of families around the world are navigating NAA15 together. Connect, share, and find the support that only people who truly understand can offer.
Join the NAA15 Family Group
Our private Facebook group is the heart of the NAA15 community. It is a moderated, supportive space where families share practical advice, emotional support, and real experiences navigating this diagnosis.
Whether you received a diagnosis last week or have been on this journey for years, there is a place for you here. Ask questions, share milestones, and connect with people who truly understand.
Join the Group
What the Research Shows
Data from published case series and the Simons Searchlight registry — the most comprehensive source of NAA15 natural history data available.
Participate in Research
Enrolling in the Simons Searchlight registry is one of the most impactful things a family can do. Your child's data contributes directly to the Natural History Study that could lead to better treatments and outcomes for all NAA15 individuals.
Participation is free, remote, and takes about 30 minutes. Families receive updates on research findings and are invited to participate in future Longitudinal Study follow-ups.
Connect With Us
Whether you are a newly diagnosed family looking for guidance, a clinician with questions, or a researcher interested in collaboration, we want to hear from you.