Based on a bilateral partnership between the University of Coimbra and the University of Bergen (Norway), this project aims to create an illustrated book, in Portuguese, English and Norwegian, as a literacy tool, that aims to raise awareness of rare diseases, in particular those that affect the "energy centers" of human cells - the mitochondria.
These rare diseases are called mitochondrial cytopathies and are often challenging to diagnose and treat. An example is Leber's hereditary optic neuropathy – LHON, a form of blindness that mainly affects young adults and which, despite being rare, is hereditary with very limited treatment, and is still considered incurable.
Thus, “Mit.OnOff” focuses “on raising awareness among the population, in Portugal and Norway, for this topic, allowing the amplification of literacy in science and health”, explains Manuela Grazina, CNC group leader and coordinator of the project.
"It is also hoped that the production of this book will offer patients a sense of inclusion, giving them visibility and influencing decision-making regarding the disease.", adds the also professor at the UC Faculty of Medicine.
This is a project that benefits not only the general population, but also the scientific community: “It is about building a tool that allows us to bring scientific information to people and bring them closer to science. We believe that it could also prove to be an educational medium in schools, patient associations, healthcare institutions and the like”, she concludes.
The development of the book started by the end of February 2022, with a multidisciplinary team of researchers, science communicators and an illustrator. For one year, dissemination materials will be developed to raise awareness for mitochondrial cytopathies. The book launch is scheduled for February 2023, the month in which is celebrated the “World Day for Rare Diseases”.
The project is developed with funding from the Bilateral Relations Fund (EEA Grants).
More information available here.