Mit.OnOff is a science communication project, based on a bilateral partnership between the University of Coimbra (Portugal) and the University of Bergen (Norway). This project aims to alert the society for the knowledge about rare diseases, specifically affecting mitochondria (mitochondrial cytopathies, particularly a form of blindness - LHON), which are considered the powerhouses of the cells in the human body, in which the energy factories are located. The initiative is focused on the creation of an illustrated book, complemented with other communication materials, explaining the problem of the diseases caused by failure in energy production, with a simple and accessible language (in Portuguese/English and English/Norwegian).
It is aimed to promote the awareness of the population (particularly from Portugal and Norway) to this topic and increase the visibility of people suffering from these diseases, in alignment with SGDs-UN 2030 agenda.
The production of this book will hopefully give the patients a sense of inclusivity and representation in the media, which will contribute for the achievement of the SGD goals (3,4,5,8,10,12), namely, ensuring people live healthy lives in order to cut child mortality and raise life expectancy; assuring everyone to have access to inclusive, equitable quality education, guaranteeing gender equity in order to contribute for a peaceful and prosperous world.
This project will benefit the whole society, including patients, families and the general public, who will gain greater understanding about the science of mitochondria and the related disorders, including disease mechanisms and available treatments.
i) Increase science and health literacy;
ii) Promote awareness and increase the support/fundraising to research of mitochondrial cytopathies;
iii) contribute to political decisions and promote a positive impact on healthcare systems, including the approval and inclusion of medicines for these diseases in the NHS.
iv) Involve healthcare professionals and contribute for the capacity to diagnostics and follow-up of these patients.
v) contribute to the inclusivity and representation of people with rare disease in the media.
Laurence Bindoff (UIB)
Inês Prazeres (Ilustradora)
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