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International MELAS Consensus Meeting in Pisa: A Milestone for Patient Advocacy and Research

From 28 to 30 November this autumn, the historic city of Pisa in Italy hosted the International MELAS Consensus meeting, skillfully led by professor Michelangelo Mancuso from the University of Pisa. This landmark gathering brought together leading clinicians, researchers, and patient advocates to refine and unify the understanding and management of MELAS, a complex mitochondrial disorder.

Participants of the MELAS Consensus standing in front of the Normale University in Pisa. There are about 40 people of mixed ages and genders wearing winter coats. It is evening and they are standing in front of a highly decorated Italian building. People at the back of the group are holding aloft two guitars. It looks as if people are cheering or singing in the photo.

Participants of the MELAS Consensus standing in front of the Normale University in Pisa.

IMP was honoured to participate in the consortium as the global umbrella organisation representing 22 mitochondrial disease patient groups worldwide. On Sunday morning, Paula Morandi, Chair of IMP, and Serena Massucci from Mitocon delivered their presentations highlighting the critical role that patient organisations play in these initiatives.

Our collective strength lies in speaking with an amplified voice that bridges international communities. We translate consensus documents into multiple languages and ensure up-to-date, accessible information reaches patients and families everywhere. This empowers those affected by MELAS and enhances global awareness.

The meeting underscored a vital truth: patient organisations must be included at every step of research, consensus-building, and educational efforts. Their lived experience and unique perspective enrich medical dialogue and help shape care guidelines that truly address patient needs.

As the medical community and patient advocates continue working side-by-side, meetings like this represent a hopeful advance towards better outcomes and stronger, united advocacy worldwide.

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