We're a network of families with children who have NKH (Nonketotic Hyperglycinemia), a rare and still incurable metabolic disorder. We share information, advice and emotional support with families, all over the world and where it matters the most, in our hearts.
Welcome to the International Family Network Website
NKH International Family Network's goal is to connect families, and provide support and knowledge to anyone affected by the metabolic condition Non Ketotic Hyperglycinemia or Glycine Encephalopathy, as it is also referred to.
This website, whilst still under construction and in its infancy, intends to eventually offer several vital tools for families in all aspects of dealing with an NKH diagnosis, regardless of outcome or severity.
In time we hope to have family profiles, memorials for those we have lost, a world map so we can see just how many of us there are and where, an extensive list and descriptions of drugs commonly used, details of many other useful websites and Facebook pages, information on how to donate to keep the NKH International Family Network running and how to donate to research, a discussion forum and much much more. This site is for the families so we welcome any input.
So please bear with us as we perfect this site and continue to support us as we will support you.
If you want to become a member of The NKH International Family Network:
When signing up for an account (so you can use the forum, access members contact details, see family locations etc) please ensure you complete as much of your profile details as possible. This is vital if we are to effectively collate information on NKH Families.
If you are not ready to or do not want to become a member of The NKH International Family Network:
This site still aims to offer information to anyone who is interested but may not need to or want to be a full member. As such you can still view the world map but family names wont be given, you can view Family Profiles but no contact details can be viewed and you cannot contribute to the discussion forums.