Name of Support Group
NKH International Family Network
Online Address of Support Group
Online Since
2000
Why I Started
Never want to have a parent feel alone in their battle with NKH as I first did when our daughter was born in 1996.
How It Works
This page is an Internet presence of a network of parents with children with Nonketotic Hyperglycinemia (NKH), a rare and still incurable metabolic disorder. NKH International Family Network's goal is to network and connect families by means of this website, newsletter, and member list, assist parents with support, advice and information on how to best care for their child/children with NKH, offer emotional and educational support to each other and to new families.
Advice
- "Aerodynamically the bumblebee should not be able to fly but the bumblebee doesn't know that. So it goes on flying anyway." ~MaryKay Ash
