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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

• nkh.org
• 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

• The Mikaere Foundation
• NKH Crusaders
• Brodyns Friends
• John Thomas NKH Foundation
• Les Petits Bourdons (French)
• NKH Deutsches Familien Netzwerk (German)
• Maud and Vic Foundation (Dutch)
• Isla Rose Foundation
• Metabolic Support – NKH
• Rare Diseases – NKH
• Climb – For inherited metabolic disorders