Connect On Facebook

It’s how many of us parents found each other to begin with. If you are a parent of a child with HIST1H1E, be sure to join the closed Parent Support Group. The latter is a private group where parents can share any and all thoughts about this complicated diagnosis with people who understand it. Please note – this private Facebook group is for parents and primary caregivers only. After you request to join, you will be asked a series of questions to confirm that you are the parent or caregiver of a person with a HIST1H1E genetic variant. You may receive a message from one of our Admins if we need additional information before we add you to the group. Once you have been approved, if you feel comfortable, please post an introduction detailing where you’re from and a little bit about your child.

2019 Meet up in New York
2019 Community Meet-up in New York, NY