CARE — For families
You are not alone.
Every family in the ZTTK community has been exactly where you are right now. We built this page — and this community — for you.
Your journey starts here
You just got the diagnosis
What ZTTK is — explained clearly, without clinical jargon, by people who have been through it. You don't need to understand everything today.
What is ZTTK? →You are not alone
700+ caregivers are connected through our Foundation in 40+ countries. Connect with our Foundation and our Facebook groups to find families who truly get it.
Join the community →Here's your next step
A clear First 100 Days roadmap. The four most important actions, in order — built by families who've been here before you.
See the roadmap →First 100 Days — Your Roadmap
Four actions, in order. This is what every ZTTK family wishes they had known on day one.
Join our contact registry, follow the ZTTK SON-Shine Foundation Page on Facebook, and connect in our private ZTTK SON-Shine Support Group.
Stay connected with the Foundation and with 700+ caregivers who get it. Questions welcome anytime!
Join & follow →Explore the clinical care guide
A comprehensive guide covering 14 medical specialties involved in ZTTK care — what each one watches for, and what to ask your team.
Read the clinical care guide →Download the Standard of Care Considerations for ZTTK Syndrome
Includes recommended medical assessments for your care team and a development guide to share with everyone, including educators.
Download the summary →Participate in ZTTK research
Help us understand ZTTK better — and accelerate the path to treatment. Three ways to contribute: (1) US families: join Citizen Health to contribute to the ZTTK research database (~5 min). (2) US and international families: enroll in the Rare-X Data Collection Program (~20 min). (3) All families: join our research mailing list so we can reach you for future studies (~2 min).
Learn how to participate →Have a question?
Our team is here to help. Send us a message and a real person will get back to you personally — no question is too small.
Contact the Foundation →Connecting with other ZTTK families meant we were no longer alone. We found our people, and Max found a community that sees all of who he is.Max's Mom
Mark Your Calendar
ZTTK Awareness Day
September 20
Wear yellow and help spread the word. Every share reaches families who haven't found us yet.