This page explains the aspects of primary mitochondrial disease (mito) that researchers need to be aware of before they work with the mito community. It is intended for people who have not previously worked with this community and those conducting qualitative research.

We recommend that you spend some time reading What is Mitochondrial Disease to gain a basic understanding of mito. You may also find reading stories of people affected by mito helpful.

Mito Foundation uses the term ‘mito’ to refer to primary mitochondrial disease. We use the term ‘mito community’ to describe:

  • People impacted by mito, even if their diagnosis is uncertain or preliminary
  • People supporting people impacted by mito. This includes parents, spouses, other family members and friends. We also include people who have supported someone who has since passed away.

This information was developed by Mito Foundation staff members in collaboration with mito community members. Last reviewed: 12 October 2023

We offer a range of funding opportunities for research focussed on primary mitochondrial disease.

We work with national and international partners to improve the lives of mito communities across the world.