@ARTICLE{Maksymowicz_Stanisław_The_2024,
 author={Maksymowicz, Stanisław},
 number={Nr 4 Troska o dobrostan},
 pages={93-117},
 journal={Kultura i Społeczeństwo},
 howpublished={online},
 year={2024},
 publisher={Komitet Socjologii PAN},
 publisher={Instytut Studiów Politycznych PAN},
 abstract={The article explores the issue of living with rare diseases within the social construct of exclusion and process of adaptation. Drawing on the empirical research, it analyses individual and collective coping strategies for Prader-Willi Syndrome (PWS) and Amyotrophic Lateral Sclerosis (ALS) from a sociological perspective. Applying the theory of the trajectory of suffering, this study explores the dynamics of social exclusion and adaptive mechanisms, revealing their complexity and multidimensional nature. The article identifies gaps in the social perception of rare diseases and emphasizes the importance of inclusive health policies that address the specificity and needs of individuals with rare diseases, as well as those of their families.},
 title={The Unseen. Suffering, Exclusion and Adaptation in Rare Diseases},
 type={Artykuły / Articles},
 URL={http://journals.pan.pl/Content/133751/PDF/KiS.2024.68_093-117.pdf},
 keywords={rare diseases, social exclusion, adaptation, Prader-Willi Syndrome, Amyotrophic Lateral Sclerosis, sociology of health, public health},
}