Advocates. Parents. Caregivers. Collaborators.

Relentlessly working to support and positively impact those living with NKH.


Find an organization dedicated to the research for the cure and supporting those effected by NKH near you.


Get involved with the NKH Leadership board. Play an active role in fundraising, and leading the NKH community.


Visit our research library to learn more about specific treatments, and studies regarding NKH and the effects it has on those effected.

NKH Leadership logo

In order to create a unified front to tackle the funding for NKH, the Leadership Board is comprised of parents, caregivers, and advocates for NKH patients. Our goal is fund the University of Notre Dame and Colorado University in their research for NKH treatment. Meeting virtually every other month, we find creative ways to collaborate in an effort to raise the necessary funds for these massive research projects.

The members of the NKH Leadership board includes several families who have created NKH organizations in hopes of empowering others who have received this devastating diagnoses.

You are not alone in this.