Learn more about ACTL6B and connect with other Simons Searchlight families with the resources below.


Support Resources



Gene Reviews are a great resource to bring to your child’s clinicians. These publications provide a summary of current research on genetic conditions and information on ongoing care.

There are no GeneReviews for ACTL6B right now.


Research Article Summaries

We currently do not have any articles summaries for ACTL6B, but we add resources to our website as they become available.

The information available about ACTL6B is limited, and families and doctors share a critical need for more information. As we learn more from children who have this gene change, we expect our list of resources and information to grow.

Full versions of published research articles can be found on PubMed. PubMed is a National Institutes of Health (NIH) online database that is free. It has a collection of both medical and scientific research articles. A PubMed search for ACTL6B articles can be found here.

You can also visit the Simons Foundation‘s SFARI Gene website to see information for researchers about this gene.


Research Opportunities

Simons Searchlight

Help the Simons Searchlight team learn more about ACTL6B genetic changes by taking part in our research. You can learn more about the project and sign up here.


Family Stories

Stories from ACTL6B families:

Click here to share your family’s story!