The HIST1H1E Foundation Family Advisory Committee (FAC) is made up of a small group of dedicated parents of HIST1H1E children to further our mission to foster communication, offer encouragement and provide resources to families.

Over time, we hope to add a number of parent support representatives to provide ad hoc assistance within their local region for the facilitation of local meet ups and welcoming new families in the area. We hope to hold meetings via Zoom, approximately every 12 weeks.

If you have any suggestions for the FAC or would like to join the group, please email

Disclaimer: The information provided on this website is to inform and help parents cope with the sudden, unexpected change in their life due to a HIST1H1E diagnosis. The information contained on this site is not intended to replace information you have received from doctors or other health professionals. We are not doctors; we are parents of children diagnosed with a HIST1H1E change.

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