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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
  • 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)
  • DRF

© 2023 NKH International Family Network. All Rights Reserved, NKH International Family Network

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