Enhancing Life Skills, Self-esteem, and Lifting of Stigma: How Culture and the Arts Can Contribute to the Well-Being of People with Rare Diseases

Globally more than 300 million people are living with a rare disease: they may present unique challenges not shared by individuals with common diseases due to the specific features of their conditions. Persons with rare diseases have been often marginalized and stigmatized. Stigma generates inequality, marginalization, discrimination, and exclusion. Bridging the gaps between health and social care for rare diseases is crucial to increase the life expectancy, quality of life and autonomy of the patients. Current evidence points towards associations between art-related cultural activities and positive health outcomes, including improvements to the quality of life; general and psychological well-being; increased social engagement; reduction in experiences of depression and anxiety; and the development of cognitive, emotional, and social skills. In addition, positive stimulation of the central nervous system cross-talks with the immune and endocrine systems, the benefit being measurable by means of biomarkers, such as cytokines and cortisol. The chapter, finally, presents and discusses several pathways and models to bring the benefits of visual arts and music to patients and to achieve a holistic interpretation of the outcomes.