COOPERATION BETWEEN PATIENT ORGANZATIONS AND PROFESSIONAL ASSOCIATIONS FOR THE IMPROVEMENT OF MEDICAL CARE IN CHILDREN WITH RARE PATHOLOGY
DOI:
https://doi.org/10.11603/24116-4944.2018.2.9373Keywords:
patient organization, medical societies, childrenAbstract
The aim of the study – to assess the international experience of cooperation between patient organizations and medical associations and its impact on the medical care for children with different diseases. Non-profit organizations unite together patient’s or their representatives are important for the protection of patients' rights, as well as promotion. Also, they are important for protecting the patient`s rights and supporting themselves and their families. Often, they are the only source of information about the disease, especially for children with rare orphan pathology. It is the personal experience of the disease that helps other people to seize themselves and the situation that has arisen. Often, only the presence of such an organization is a driving force in conducting research on the study of rare pathology. Today, representatives of patient organizations are invited to a different medical conference. They are involved in making important decisions that are aimed at the improving the quality of life of patients with rare and chronic diseases. On the example of patient organizations for children and adults with primary immunodeficiency and spina bifida and hydrocephalus, the main links of their work and cooperation with medical associations in the region, Ukraine and the world are shown. Patient organizations are also aimed at promoting the standards of medical care for patients, scientific and practical solutions to modern problems in various fields of medicine, and the promotion of the satisfaction of medical and organizational needs of specialists. Involvement of patient organizations in the arrangement of health care is an important aspect in reforming the health care system and in shaping the development of the medical sector, depending on the patient's needs. The search of literature was carried out by using PubMed, GoogleScholar and CyberLeninka databases.
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