AGAIN BILL PRESENTED BY DR. MARIA ELENA MARTIN The Senate and Chamber of Deputies, … Article 1 – Declaration of national interest. Is declared of national interest the comprehensive protection of psychophysical health of those affected by Epidermolysis Bullosa, EB hereafter. Article 2 – Objectives.This Law shall have the following objectives: a) Ensuring the identification, control and comprehensive treatment of EB b) Ensuring skilled care for people suffering from EB c) Encourage research and study of the disease d) Promote the planning and implementation of actions and measures to enable social inclusion of people affected by EB. Chapter II National Program for Protection of persons suffering from Epidermolysis Bullosa Article 3 – Creation. Believe in the orbit of the Ministry of Health of the Nation, the National Program for Protection of persons suffering from Epidermolysis Bullosa. Article 4 – Objectives.The National Program for Protection of persons suffering from Epidermolysis Bullosa, have the following objectives: a) Promote research and study of the disease called Epidermolysis Bullosa b) Organize the continuing publication, dissemination and sharing of progress in scientific understanding of EB c) Develop and implement, in coordination with the Ministry of Education’s educational programs, training, information and / or dissemination of knowledge about the disease, in undergraduate and graduate professionals and auxiliary health of all universities and tertiary educational institutions in the country.The programs must, in particular, provide information, recommendations and / or guides on the proper management of patients with EB and techniques or procedures to be used in healing to be performed on them d) Develop and implement, in coordination with the Ministry of National Education, training programs for educators and staff of schools, on the characteristics of this disease, detection and appropriate care should be provided to people affected by EB schools e) Create a registry of protocols and guidelines for action to facilitate the appropriate involvement of health professionals, their assistants and other individuals involved in the care of those affected by EB.