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Among all the organelles in an animal cell, only mitochondria have their own independent genomes. Animal mitochondrial DNA is a double-stranded, closed-circular molecule with around 20,000 base pairs. Mitochondrial DNA is unique in that one of its two strands, the heavy, or H, -strand is guanine rich, whereas the complementary strand is cytosine rich and called the light, or L, -strand. Compared to nuclear DNA, mitochondrial DNA has a very low percentage of non-coding regions and is marked by...
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Mitochondria are eukaryotic cellular organelles that are known to produce energy through a process called oxidative phosphorylation. Besides their primary function, mitochondria are involved in various cellular processes, including cell growth, differentiation, signaling, metabolism, and senescence. Age-related changes cause a decline in mitochondrial quality and integrity due to increased mitochondrial mutations and oxidative damage. Thus, aging can severely impact mitochondrial functions,...
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Mit.OnOff: A Science Communication Project for Public Awareness about Mitochondrial Cytopathies.

Manuela Grazina1, Sara Martins2, Maria João Santos1

  • 1University of Coimbra CNC - Center for Neuroscience and Cell Biology, FMUC - Faculty of Medicine; CIBB - Center for Innovative Biomedicine and Biotechnology Coimbra Portugal.

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Summary

This project enhances health literacy on rare mitochondrial diseases through an illustrated book and public engagement. It aims to increase societal understanding and patient inclusion, particularly for Leber hereditary optic neuropathy (LHON).

Keywords:
LHONhealth literacymitochondriamitochondrial cytopathiesmitochondrial diseasesrare diseasesscience communication

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Area of Science:

  • Mitochondrial diseases and rare genetic disorders.
  • Science communication and health literacy initiatives.
  • International scientific collaboration and public engagement.

Background:

  • Mitochondrial diseases are rare, heterogeneous, incurable, and difficult to diagnose, leading to low literacy.
  • A significant gap exists in societal, educational, and healthcare understanding of these complex conditions.
  • Innovative tools are crucial for advancing scientific and health literacy in this domain.

Purpose of the Study:

  • To address the lack of knowledge and health literacy surrounding mitochondrial diseases, focusing on Leber hereditary optic neuropathy (LHON).
  • To foster societal awareness and provide in-depth knowledge for patients and affected communities.
  • To promote inclusion and representation for patients through accessible scientific communication.

Main Methods:

  • Development of an illustrated book explaining mitochondrial diseases in simple, accessible language.
  • Bilateral partnership between the University of Coimbra (Portugal) and the University of Bergen (Norway).
  • Distribution of educational materials, complemented by oral communications and public engagement activities, including simulations of LHON.

Main Results:

  • The Mit.OnOff project created an illustrated book and communication materials to improve understanding of mitochondrial diseases.
  • The initiative involves scientists, communicators, and artists, aligning with United Nations Sustainable Development Goals (SDGs).
  • Public engagement activities, including LHON simulation glasses, aim to enhance empathy and understanding of living with rare diseases.

Conclusions:

  • The project aims to increase patient inclusion and media representation, contributing to improved health and educational outcomes.
  • Successful implementation supports UN SDGs related to health, education, equality, and reduced inequalities.
  • The initiative serves as a relevant educational medium for schools and healthcare providers, promoting a better understanding of rare mitochondrial diseases.