DEFENCE OF THE RIGHTS OF PEOPLE WITH ALBINISM: a study conducted in APALBA

Abstract

This article proposes an approach to the performance, difficulties and challenges present in the experience of the Association of People with Albinism in Bahia (APALBA), a civil society entity, a pioneer in the defense of the rights of people with albinism, which throughout its history has significantly contributed to raising self-esteem and improving the quality of life of its target audience, through the achievement of public actions for social inclusion. It also aims to narrate how the entity's struggle in defense of rights took place, as well as its participation in the various informal and institutional forums that participate in the formulation of public policies at national and international levels. The article also addresses the challenges to be faced by APALBA, whose survival, despite having a decisive participation in the social inclusion and empowerment of people with albinism, is at imminent risk, due to the various difficulties in its functioning, especially due to the lack of financial resources, material and human, as well as the absence of sustainability perspectives.