HIST1H1E is a Neurodevelopmental Syndrome (HNDS), recently discovered by Dr. Kate Tatton Brown. It is caused by a genetic mutation, a change within the HIST1H1E gene.

At this time, the sample of those people identified is small (about 50 people worldwide), and we hope through our research to identify others who are affected by this syndrome. 

Our goal is to gain a better understanding of the clinical symptoms that will lead to the best treatments available. 

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.

Board of Directors

Kimberly Greenberg – President
Jason Leblanc – Treasurer
Kara MacMillan – Secretary
Kelsey Pitts
Tracy Chapman

Our Objectives

FOSTER communication, offer encouragement and provide resources to families.

PARTNER with researchers through fundraising and grants to develop potential treatments and gain a better understanding of a HNDS diagnosis.

FACILITATE the development of an international patient registry program.

RAISE the profile of this extremely rare diagnosis through the creation of a public awareness campaign.