The MED13 Foundation is a family-founded nonprofit dedicated to advancing research and supporting people affected by MED13 syndrome, a rare neurodevelopmental disorder. Established after the condition’s first comprehensive characterization in 2018, the organization brings together families, researchers, and clinicians to accelerate scientific discovery and pursue treatments and a cure. Its work also aims to help every person with MED13 syndrome reach their full potential.

The foundation builds research infrastructure through a patient registry, research cohort, biorepository, and support for natural history studies, enabling researchers to learn more about the condition. It funds research and shares information about MED13 syndrome, including educational resources, research updates, and community news. For families, the organization offers opportunities to connect, share personal stories, and receive support during the diagnostic journey.

People can contribute by joining the research cohort, volunteering skills such as grant writing, translation, communications, or mentoring, or supporting the mission with donations. The foundation also welcomes board participation and hosts community and scientific events, including its annual gala and virtual symposium.