ÉTICA DE LA EQUIDAD Y JUSTICIA EN EL ACCESO AL DIAGNÓSTICO, TRATAMIENTO Y REHABILITACIÓN DE LOS PACIENTES CON ENFERMEDADES RARAS

Rare diseases are defined by the reduced frequency in the population, leading to numerous adverse consequences, both at medical and social level. These pathologies, being little known, the diagnose is late or non-existent and there are no specific treatments for many of them. They are characterized by debilitating, degenerative, chronic diseases with decreased quality of life, loss of autonomy, high level of pain and suffering of the person and his family, and usually life threatening. Those with specific treatment are so costly that they can not be financed by the patient without the state contribution. This situation results from the ethical point of view the need to consider the principle of Beneficence and Social Justice in the decisions taken.