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NKH International Family Network

Share Your Story: Tell Us About Your Special-Needs Online Support Group

By Judith14843

NKH International Family Network

Name of Support Group

NKH International Family Network

Online Address of Support Group

www.nkh-network.org

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

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