Beatriz González de Garay Domínguez

Universidad de Salamanca ·  Department of Sociology and Communication

Low-prevalence diseases -commonly known as rare diseases- have been socially configured as a 21th-century phenomena. This new category was built from the claims of the affected and their relatives and through strategies of visibility and awareness and that determined its inclusion as health-care-priority European Union policy agendas with sociosanitary and research repercussions. Despite the existence of a significant interest from biomedicine and sociology, there is a historiographical void in the comprehension of this new entity. Our starting point is the hypothesis that this category results from the confluence between molecularization of medicine responsible for the singularization that multiplies the diseases catalogue- and the increasing number of patients without diagnosis or with rare diagnosis with a no roper answer in the health systems. From these two positions, we can define a process built from relationships and interests of health professionals, patients, their relatives and the media. This process is also strongly conditioned by geopolitical and cultural aspects the same that gives value to the patients experience and contribute for their empowerment-. This perspective motivates the interest in perform comparative studies between regions and countries, in this case, Andalusia and Castile and León, Spain and Portugal during a large period of 75 years (1940-2015). The general goals in this project are, consequently, the analysis of the medical and social factors that have determined the building and development of the rare diseases as a category in the Iberian Peninsula; the study of the professional, care and social changes promoted by the social movements of those affected by low prevalence diseases and/or diseases without diagnosis including the characterization of which were the successful strategies- and, in third place, to recover the individual and collective experience of the affected persons in order to recognize their importance as a source of knowledge, contributing in their empowerment. Towards the increasing number of low-prevalence diseases described, more than six thousand- our analysis must be based on case studies. Through some criteria based in the entities medical and social characteristics, four diseases were selected: post-polio syndrome, Turner syndrome, lysosomal storage diseases and the group of patients without diagnosis. The research team has a multidisciplinary profile (history, medicine, sociology, and law), a significant experience in related subjects (with previous approved research projects) and the support of several patients associations. This support gives a warrantee of the transfer of results: the new knowledge will revert directly on them and it will be immediately integrated by those associations. Besides the scientific diffusion of the results, the research team will organize itinerant expositions and different social events in order to spread and democratize the access to this knowledge.

Em pleno século XXI, as tecnologias de informação e comunicação têm vindo a desempenhar um papel capital no desenvolvimento das indústrias culturais e de lazer, ao mesmo tempo que as têm sobredimensionado até convertê-las em agentes potenciadores não só da economia dos países ibéricos (Portugal e Espanha), mas também da identidade social dos seus cidadãos. Nesse sentido pretende-se, com a realização das I Jornadas Ibéricas sobre Cultura, Património e Turismo na Sociedade Digital, aprofundar a reflexão académica, teórica e metodológica, sobre as interações que se dão entre estes três importantes fenómenos através dos media e das TIC; interações essas que tendem a fomentar uma sinergia positiva entre as citadas esferas, ainda que, por vezes, também possam gerar riscos como a “McDonalização” ou a “Cocacolonização” da cultura, a deterioração e o descuido de certos elementos patrimoniais, por serem menos conceituados e turisticamente menos relevantes do que outros, ou ainda interações inexistentes e/ou insatisfatórias entre a população local (recetora) e a visitante. Estas e outras questões serão abordadas no contexto de umas jornadas que pretendem, também, ser o início de um intercâmbio frutífero e duradouro entre os investigadores de Portugal e Espanha que se dedicam a esta área de estudos.