Psychosocial Considerations for the Child with Rare Disease: A Review with Recommendations and Calls to Action

• Main Authors: Leslee T. Belzer (Author), S. Margaret Wright (Author), Emily J. Goodwin (Author), Mehar N. Singh (Author), Brian S. Carter (Author)
• Formato: Libro
• Publicado: MDPI AG, 2022-06-01T00:00:00Z.
• Subjects: article
• Acceso en liña: Connect to this object online.

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. Ch...