Creacion de un comic como herramienta para visibilizar problematicas seleccionadas en el ambito estetico, etico y politico en pacientes con enfermedades raras/huerfanas.

Rare / orphan diseases, given their very low frequency of presentation, imply, in addition to the fragility that patient suffers because of the disease itself (sometimes even life- threatening), an ethical challenge (since neither the medical community nor the non-medical community tends to see these patients beyond their limitations) and political challenge (since health systems tend to delay the timely care of these patients given the high cost of their illness) That reinforces this fragility. In addition, a large number of patients diagnosed with a rare or orphan disease, are children, adolescents and young adults, and therefore require alternative communication strategies that allow not only to explore in a simple way, but also directly and even fun the different tensions (aesthetic, Ethical and political) that occur in the daily life of the patient diagnosed with a rare / orphan disease. There is evidence that comic is a powerful tool to accomplish this task and therefore we propose the creation of a comic to explore the selected aesthetic, ethical and political issues and thus contribute, On the one hand to offer, through a graphic fiction narrative, elements of reflection for patients diagnosed with a rare disease and their families and on the other hand to make these problems visible to the community (both medical and non-medical) and contributing thus to strengthening the debate of a medical condition from an artistic work.