National MED13L Day

When will this Day be celebrated?  May 13th of each calendar year.

What is National MED13L Day?  National MED13L Day celebrates those diagnosed with MED13L around the globe. MED13L haplo-insufficiency syndrome is a genetic syndrome that causes a clinical spectrum of recognizable traits, including but not limited to, intellectual disability, profound language impairment, facial dysmorphisms, hand, foot, vision and auditory abnormalities, hypotonia with motor delays, behavioral issues, seizures, cardiac abnormalities, and autism.

Why is this Day being created?  Although considered a rare disease, with the advancement of genetic testing, more children and young adults are being diagnosed with MED13L syndrome at an alarming rate. Our goals are to connect and empower MED13L families around the world while we also strengthen our network in order to learn more. On this day we spread awareness and celebrate our MED13L community.

How should this day be observed?  On this day, we encourage people around the world to donate their time and resources to raise awareness for those diagnosed with MED13L. Together we can make a difference!

Who created this day?  This day was created by Kelly Sexton in 2022.    


May 13, 2023