Living with Mitochrondrial Disease – CLOSED

This study has now closed

Thank you to everyone who showed interest in this interview study. Recruitment has now finished.  We’ve kept this page live so you can see the type of research and patient conversations we support through My Health Focus.  If you’d like to hear about upcoming interviews, surveys or clinical research opportunities, join us today so you don’t miss out!

Share your experience and help shape future research (now closed)

We’re looking to speak with people affected by the m.3243A>G mitochondrial mutation, to better understand what life is really like, from diagnosis through to day-to-day challenges and treatment experiences.

This mutation can present in different ways, including MELAS, MIDD (maternally inherited diabetes and deafness), and a range of milder or related presentations. Wherever you sit on that spectrum, we’d love to hear from you.

This is a chance to share your story in a relaxed, one-to-one online conversation (around 45–60 minutes).

As a thank you for your time, you’ll receive £100 or local currency equivalent.

Your experience will help inform how future research and clinical trials are designed, so they’re more practical, supportive, and aligned with the real needs of people living with this condition.

With your permission, the conversation will be recorded. Recordings will not be used in the public domain. Short excerpts may be used in an internal video to support an organisation working with drug developers, helping them better understand what matters to patients and families. While these may include identifiable video, they will not be shared more widely without your explicit consent.