Map of Nonketotic Hyperglycinemia (NKH) familiesWe're a network of families with children who have NKH (Nonketotic Hyperglycinemia), a rare and still incurable metabolic disorder

Our Story

There are 100+ families living with Nonketotic Hyperglycineamia around the world. We support every family who needs us, particularly the newly diagnosed.

From our initial conception in 1995 to now, we have 300+ in our network.

You’re not alone, we’re here with you.

Informational Websites

• foundationnkh.org
• wiki.org/glycineencephalopathy
• nkhconference.com

Facebook Support Groups

• NKH Questions & Answers
• NKH Confidential
• NKH International Family Network
• NKH UK
• NKH France – Ensemble contre l’hyperglycinémie sans cétose
• NKH Polska – Hiperglicynemia Nieketotyczna
• NKH Italia – Iperglicinemia Non Chetotica
• NKH Germany – Die deutsche NKH Facebook Gruppe
• NKH Brazil – Hiperglicinemia Não Cetótica/
• Grieving NKH Families
• NKH Grandparents

NKH Researchers

• Dr Johan Van Hove, Uni of CO, USA
• Prof Nick Greene, UCL, UK
• Dr Kasturi Halder, Uni of Notre Dame, US

NKH Charities

• Joseph’s Goal
• NKH Crusaders
• Drake Rayden Foundation
• Fund NKH Cure
• Brodyns Friends
• Smiles for Miles
• Hope for NKH
• Rare Diseases – NKH
• Climb – For inherited metabolic disorders
• John Thomas NKH Foundation
• Les Petits Bourdons
• NKH Deutsches Familien Netzwerk (German)