Our mission

HIST1H1E Syndrome Foundation is a parent-run organization dedicated to furthering research on the HIST1H1E Neurological Disorder Syndrome (HNDS) and providing support and education to the small, but growing community of individuals and families impacted by a HNDS diagnosis.

Learn more about the foundation.

Our Community

Receiving the diagnosis of a HIST1H1E variant for your child can trigger many different reactions: some find it overwhelming to cope with, and some find it a relief to finally get some answers. Regardless of your situation, we are very happy you found us.

HIST1H1E is rare, but it is important to know you are not alone. We hope you will find the information on this website helpful.

Be part of our community.

Your donation helps

Every little bit helps with 100% of proceeds going to support families & research.

Make a one-time donation or signup to contribute monthly.