We all share common challenges with NKH. Developing a patient registry and connecting all families across the globe is our goal. We want to help equip you with the latest information and research for better treatment and improved quality of life. We are here to provide friendship and most of all hope!
Research is forever evolving in NKH. We will do our best to keep this library updated with the most current clinical data regarding NKH treatments and gene therapy. It is not a matter of if there is a cure or better treatment coming but when. With collaborative efforts, we can help the researchers prepare for clinical studies. Be inspired
The NKH community is a very small but mighty group. We are determined to fund and find a cure or better treatment for our babies. Join the community and discover experienced peers to help you navigate this journey. Help the researchers by completing the patient registry and providing medical records.