Help Accomplish Our Mission

  • Coordinate and collaborate with the global scientific community to understand the function of the MED13L gene in order to develop effective treatments and a cure for MED13L syndrome
  • Increase medical community and public awareness of the complexity and potential severity of MED13L syndrome
  • Provide educational and emotional support for those affected by MED13L syndrome
  • Raise money to fund our goals

Putting MED13L

As the parent of a child with a MED13L mutation, we ask that you please put yourself and your child “on the map” by reaching out and letting us know you exist (even anonymously, if you prefer). 

It is one of THE MOST IMPORTANT THINGS YOU CAN DO FOR YOUR CHILD, and it is the only way we will ever be able to advocate for new MED13L treatments and therapies.

Find a Cure!

Did you or your child just receive a new diagnosis of MED13L? If so, please know you are not alone!