The Mikaere Foundation

About The Mikaere Foundation

The Mikaere Foundation is a UK-based charity that supports children with Nonketotic Hyperglycinemia (NKH) – a rare and terminal metabolic disorder. We work towards funding NKH Research, so we can – one day – give children with NKH real futures. Until then, we support children and families living with NKH through our information and community programmes.

The Mikaere Foundation has three streams of work:

1. Raise funds for research into an effective treatment for Nonketotic Hyerpglycinemia (NKH)
We’ve partnered with teams at UCL in London (who are working on gene therapy treatments), and the University of Colorado (who are working on compound/chaperone treatments). We’re hopeful that one day NKH will have an effective treatment, and will one day no longer be a devastating, life limiting diagnosis.

2. Provide trusted medical information about Nonketotic Hyperglycinemia (NKH)
NKH is not a well known disorder, and finding clear, easily understandable information can be difficult. We provide trusted medical information about NKH to newly diagnosed families and the medical professionals who support them. This information is reviewed by NKH specialists, independently accredited, and meets the requirements of NHS trusts and services for information dissemination.

3. Provide NKH Patient Community Support
Despite being the second most common disorder of amino acid metabolism, because of the sharp death rate, families living with NKH are rare, and spread across the country. We hold community meets up to offer connection, emotional support and provide a safe place to share struggles, find empathy and reduce isolation for families. We also hold safe spaces online.