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
Nearly 500 families in 40+ countries. A private community built specifically for ZTTK families — the only people who truly understand.
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 the private ZTTK SON-Shine Support Group and follow the ZTTK SON-Shine Foundation Page on Facebook.
Connect with over 650 families who understand your exact situation. Questions welcome at any hour.
Join & follow →Download the clinical summary
A one-page brief to share with your medical team at your next appointment. Written with clinicians.
Download the summary →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 →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. Email us directly and a real person will get back to you personally — no question is too small.
Email the Foundation →The moment we found the ZTTK community, everything changed. We finally had answers — and people who truly understood.LZTTK Family — Mum to Oliver — diagnosed 2021
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.