Med13

The MED13 Foundation is a patient-founded nonprofit supporting families affected by MED13 syndrome, an ultra-rare neurodevelopmental disorder caused by variants in the MED13 gene. With approximately 200 diagnosed individuals worldwide, we are building a global research cohort in partnership with COMBINEDBrain to accelerate the path toward treatments. Founded by parents of children with MED13, we fund research, share resources, and connect families navigating this rare diagnosis.