UK Government Strategy for Rare Diseases

UK Strategy for Rare Diseases


Patient Care Guidelines

*Note from My Mito Mission* Please note that the guidance below includes the following:

This document is intended for guidance only, and should not replace patient-specific management plans influenced by other factors such as patient preference and pragmatism. (NHS Rare Mitochondrial Diseases Service)

(Mitochondrial Medicine Society) Specific decisions about patient management including hospitalisation require clinical judgement and should be case-specific. Decisions should reflect the individual patient’s presentation as well as an understanding of the etiology for the acute decompensation and the pathophysiology of the underlaying mitochondrial disorder.

Care Guidelines from the NHS RMDS

Patient Care Guidelines (MMS)


Travel Insurance

*Note from My Mito Mission* We cannot vouch for vouch for companies or products being appropriate for any individual. However, we are happy to recommend this – and any other insurance companies – who have specifically tailored their screening to accommodate mitochondrial disease and other genetic conditions.



Mitochondrial Genome Database