CureTAOK1 is, by design, an international foundation. TAOK1-associated disorder is so rare that no single country brings together enough families, researchers, or resources to push the research forward on its own – which is why, from day one, we have worked across borders. We connect families from around the world, communicate in English, and collaborate with researchers regardless of which continent they work on. The strength of our community comes precisely from bringing experiences scattered across the world together into one whole.
The foundation’s international character does not mean, however, that after a diagnosis a family is left to face everything alone in a foreign language. We know how much it means to talk to someone who speaks your language, knows the local healthcare system, and has walked the same path – from an incomprehensible genetic test result to everyday life with a child with TAOK1-NDD. That is why we are building a network of regional contacts: parents and loved ones of people with TAOK1-NDD who have agreed to be the first point of contact for families from their country or region.
We currently have contact people in the United States, Australia, France, Germany, Ireland, Italy, Poland, Spain, Sweden, and the United Kingdom. They can help with the first steps after a diagnosis: explain how to join the international parent group, share their experience with the local care and therapy system, and sometimes simply listen — in your own language. If your country is not on this list, write to us anyway: we respond to every family, no matter where they are on the map – and perhaps you will become the first contact for the next families from your region.
In some countries, local foundations are also planned, which will operate in coordination with CureTAOK1. A local organization can do what an international structure cannot do as effectively: raise national funding and donations on favorable tax terms, work with local doctors and centers, advocate for families within the national health and education systems, and communicate in the local language. All of these initiatives will pursue a shared mission and a shared research agenda – so that efforts are never duplicated, and every złoty, euro, or dollar works toward the same goal.
Would you like to become a regional contact in your country or help establish a local foundation? Write to us. This network grows thanks to families who, having received support themselves, decide to extend a hand to the next ones.
This content is for informational purposes only and does not replace medical advice. Last updated: August 2026.