摘要:This article analyses the experiences of the association movement in Latin America that brings together individuals and families with rare (RD) or low prevalence diseases (LPD). It also looks at their needs from global health, social, research and education perspectives. The nature of social work assessments and interventions in rare diseases helps us better understand the needs of people with RDs or LPDs and facilitates the creation of associations. Social work aims at consolidating the social fabric that will lead to the recognition of RDs as a health and social priority at an international level.
关键词:Rare Disease (RD); Low Prevalence Disease (LPD); Latin American Alliance of Rare Diseases (ALIBER); Social Fabric; Association Movement—Social Work