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Psychosocial Considerations For The Child With Rare Disease: A Review With Recommendations And Calls To Action., Leslee Belzer, Margaret Wright, Emily J. Goodwin, Mehar N. Singh, Brian S. Carter

Manuscripts, Articles, Book Chapters and Other Papers

Rare diseases (RD) affect children, adolescents, and their families infrequently, but with a significant impact. The diagnostic odyssey undertaken as part of having a child with RD is immense and carries with it practical, emotional, relational, and contextual issues that are not well understood. Children with RD often have chronic and complex medical conditions requiring a complicated milieu of care by numerous clinical caregivers. They may feel isolated and may feel stigmas in settings of education, employment, and the workplace, or a lack a social support or understanding. Some parents report facing similar loneliness amidst a veritable medicalization of their …