THE ROLE OF PUBLIC ORGANIZATIONS IN THE ORGANIZATION OF MEDICAL CARE: ACCORDING TO A SURVEY OF PARENTS OF CHILDREN SUFFERING FROM ORPHAN DISEASES

Abstract

The activities of public patient organizations are multifaceted: providing legal support to patients in order to protect their legal rights; information and educational work, conducting “schools”, providing specific types of assistance that can provide those involved in the problem. Public patient organizations are the “voice” of all patients with orphan diseases in solving their problems at the level of the highest echelons of power. From 2016-2017 years in the Reference center of congenital hereditary diseases, genetic disorders, orphan and other rare diseases of GBUZ “Morozovskaya DGKB DZM” on a specially designed questionnaire conducted a sociological study on awareness of parents of children suffering ABOUT the public patient organizations. Public organizations provide information and legal support, contact with pharmaceutical companies, participate in solving the problems of patients at the state level. Taking into account the rights and opportunities of public associations, it is necessary for doctors to inform parents about the existence of charitable organizations and their involvement in public patient organizations, as well as to participate in the work of health schools for parents.

Keywords

• rare (orphan) diseases (ABOUT)
• awareness of parents of children suffering ABOUT
• public charitable organizations
• sources of information
• schools for parents