There are several aspects of primary mitochondrial disease (mito) that researchers would benefit from understanding before they work with the mito community. While this information has been compiled specifically for qualitative researchers, it is relevant regardless of the area of research being undertaken and whether or not the researcher has previously engaged with the mito community.

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.

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.