New Patient Journey for Primary Mitochondrial Myopathies Launched

7 Jul, 2026

IMP has worked with ERN EURO‑NMD and several leading patient organisations, including Mitocon, the Bulgarian Association for Neuromuscular Diseases, and AFM‑Telethon to co‑develop a new Primary Mitochondrial Myopathies (PMM) Patient Journey. The project was guided by Prof. Michelangelo Mancuso, a recognised mitochondrial specialist from Italy, and shaped by the lived experiences of patients across Europe.

The Patient Journey provides a clear, structured overview of what adults with mitochondrial diseases typically face, from the earliest symptoms through diagnosis, multidisciplinary care, and long‑term disease management. It highlights the challenges many patients encounter, such as fatigue, muscle weakness, visual disturbances, and the emotional impact of living with a chronic condition. It also outlines the key specialists involved in mitochondrial diseases care and the practical steps patients can take to access the right expertise sooner.

Importantly, the resource recognises the vital role of caregivers, offering guidance on supporting daily life, coordinating care, and planning for future needs. While there is currently no cure for mitochondrial diseases, the Patient Journey also points to ongoing research and clinical trials that offer hope for future treatments.

This new framework aims to empower patients, families, and clinicians with clearer information and a shared understanding of the patient pathway.

If you are interested translations of the Patient Journey into additional languages, please contact us.