Psoriatic arthritis and psoriasis: role of patient advocacy organisations in the twenty first century

Abstract

All the psoriatic arthritis and psoriasis patient advocacy organisations are devoted to promoting public awareness and patient education; supporting access to effective treatments and physicians committed to the welfare of patients; working with physicians and other organisations to facilitate development of new treatments; and supporting research for more effective treatments and a cure for psoriasis and psoriatic arthritis. They have participated in the remaking of health politics in the late twentieth century. This was an era in which small patient support and advocacy groups were transformed into sophisticated national health organisations integral to the formation of national health policy and research, treatment, and education funding by working with physicians, legislators, pharmaceutical companies, third party payors, and the media. As we enter the twenty first century, some of these groups have done critical surveys of patients and physicians to discern needs that are redirecting their programming and reshaping directions in the field. Many national leagues have united to form international organisations. Although differences in their national healthcare systems, the age of their organisations, and the diseases they cover are reflected in the focus of their individual activities, much unites them. Whatever their size, as their roles have come to be recognised in the healthcare community, the patient advocacy organisations welcome being invited to the decision making table. This report describes a sampling of these organisations.