0Births Result in NKH
NKH is rare. Only 1 in 76,000 births result in a diagnosis. With only an estimated 500 people worldwide living with NKH, it is considered an orphaned or neglected disease.
Orphaned diseases are defined as: A disease that has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. An orphan disease may be a rare disease (according to US criteria, a disease that affects fewer than 200,000 people).
In other words, the only people working to cure such a diagnosis, are those directly effected by them.
Created as 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.