Patient Census

Please take 2 minutes to join the ZTTK SON-Shine Foundation’s contact registry so we can improve accuracy of the ZTTK patient census and contact you on research opportunities.

How Many People have ZTTK Syndrome?

There are ~80 identified ZTTK patients in the scientific literature. Our foundation has identified 250+ patients (based on our global Facebook group including caregivers, parents, patients, and other family support groups worldwide).

But we know there are likely a lot more.

Why is it imperative that we count patients?

It is crucial to identify all those with ZTTK so we can reach out and recruit more people into research studies and natural history studies such as ZTTK’s major collaboration with Citizen Health.

It is also critical to convince industry that we have enough patients to justify their investment:

“I think there are many in industry who are actually looking for a condition with say, a population of a thousand or more individuals. And that there is a reasonably clear playbook for approaching folks in industry and with coupling the right science with the right commercialization partners there’s a relatively clear playbook for advancing those relatively quickly in the matter of a few years.” – Dr. Timothy Yu, Simons Searchlight conference, August 2021.

Every new diagnosis proves that there are still more patients out there. ZTTK SON-Shine Foundation is determined to find as many patients as we can. One of the most powerful things you can do as parents, caregivers, and siblings is to share stories.

Please take 2 minutes to join the ZTTK SON-Shine Foundation’s contact registry so we can count your or your SON-Shine, and contact you on research opportunities. Click here.