A New Home for the ZTTK Community

We're thrilled to share a new home for the ZTTK community online. This site was built for the hundreds of ZTTK families connecting from every corner of the world — and for the researchers, clinicians, and supporters working alongside them toward a breakthrough.

For most families, a ZTTK diagnosis starts with more questions than answers. That's exactly why we rebuilt this site: so no family has to face those first days alone, and so the wider ZTTK community — from newly diagnosed parents to longtime researchers — has one clear place to turn.

A Better First Stop for Newly Diagnosed Families

New to a ZTTK diagnosis? Our First 100 Days roadmap walks you through four concrete steps: join our private family group, download a one-page clinical summary for your medical team, explore our Clinical Care Guide, and learn how to participate in research. The Clinical Care Guide alone covers 14 medical specialties involved in ZTTK care — and it now prints and shares cleanly, so families can hand it straight to their doctors at their next appointment. Want the plain-language basics first? Our newly rebuilt What Is ZTTK? page walks through the SON gene and the syndrome with custom graphics built just for this site.

Real Stories, Real Faces

Browse real family stories and a growing community photo gallery — proof, in every photo, that a ZTTK diagnosis is the beginning of a story, not the end of one. A new interactive ambassador map also makes it easier to find and connect with a family ambassador in your own country — right now, 14 ambassadors represent 16 territories across the globe.

A Clearer View of the Science

Our Research hub brings current research projects, published studies, and our path to a breakthrough together in one place, so families, clinicians, and researchers can all see exactly where the science stands. Our Patient Census page explains why an accurate worldwide patient count matters so much — it shapes everything from clinical trial design to whether pharmaceutical companies choose to invest in ZTTK treatments at all.

Stay Connected

A new Events page brings together everything from our annual Global Conference to community fundraisers like the 5K for ZTTK and Songs for SonShines — including today. If you’re reading this on September 20th, it’s ZTTK Awareness Day: our community’s annual day of giving and awareness, and there’s no better day to explore everything this new site has to offer.

We built this site to be modern, accessible, and just as easy to use from a phone in a hospital waiting room as from a laptop at home — because that's genuinely where a lot of our community reads it.

This is just the beginning. Explore the new site, and let us know what you think — every page here was built for you.