Proyecto audio fotografico para el reconocimiento de la auto imagen construida por personas con enfermedades raras, en el proceso de salud y enfermedad.

Rare diseases are defined as diseases affecting a small number of persons in comparison to general population. USA definition for a rare disease says that it is the one affecting less than 200.000 people in a given moment. Rare diseases are also known as orphan diseases. Morbidity and mortality associated to rare diseases generate a negative impact for the affected patient and his family and also for the health care system. Photography has been playing a crucial role for documentation of diagnosis and prognosis for patients with rare diseases, but also for many other patients since XIX century. This role of photography seems to contribute to the construction of the self image of patients, which is very important for the healing process. It also seems to be important to reinforce ethic perspective of health workers about getting photographic registry of these patients, since this registry may affect their prognosis. Our intention, taking into account photographer Levi Gershkowitz aesthetic proposal, is to take photographs of patients with rare diseases in their own diary context, as a way to make evident the power of photography to help in the construction of self image of these patients, and also take testimony as semi structured interview, from experiences of patients and their families with ethic management of photographic registry in clinical scenarios.