Community · Community
You Are Part of a Global Community
Families and caregivers from around the world are navigating ZTTK together. Our online community is where stories, questions, and hope are shared every day.
Ready to Connect?
Join hundreds of ZTTK families who have found support, answers, and friendship in our community.
Join the Contact Registry →Facebook Community Group
Join the ZTTK Families Community
Our private Facebook group is the heart of the ZTTK community — a safe space where parents, caregivers, and family members share experiences, ask questions, and support each other through the daily realities of ZTTK syndrome.
The group is private and moderated. You'll need to answer a short set of questions to join — this helps us keep the space safe for our families.
This is a public page and the Foundation's main channel for announcements, updates, and information sharing — think research news, event details, and resources for families navigating a ZTTK diagnosis.
Follow Our Facebook PageOpens in Facebook. You'll need a Facebook account to join or follow.
What to Expect
A Space Built for Our Families
Share & Learn
Ask questions and get answers from families who have been there. Whether it's a new symptom, a school IEP, or a medication question — someone in the group has navigated it.
Private & Moderated
The group is private — only approved members can see posts. Moderators keep the space respectful, supportive, and free from medical misinformation.
Global Connections
Members span North America, Europe, Australia, and beyond. The shared diagnosis crosses borders — and so does the community.
Event Updates
The group is where Foundation events — including the annual Global Conference — are first announced and discussed.
Caregiver Focus
Content is primarily for parents and caregivers. Many members have been part of the community for years and are willing to mentor newly diagnosed families.
Research Updates
Foundation staff share research news, clinical trial announcements, and conference updates in the group as they happen.
More Ways to Connect
Stay Connected
Annual Global Conference
Once a year, the ZTTK community gathers in person — for science, family connection, and hope. Our 2026 conference returns to Boston in July.
2026 Conference details →Newly Diagnosed?
If you've just received a ZTTK diagnosis, start here. Our step-by-step guide will walk you through the first things to know, do, and who to contact.
Newly diagnosed guide →