Promoción de la salud de las personas con enfermedades raras y sus familias: experiencia de abordaje psicosocial

Abstract

This paper reports the experience with a plan to care for patients with rare diseases and their families based on a psychosocial approach and carried out by the Psychological Care Unit and the Information and Counseling Unit of the Spanish Federation of Rare Diseases. This experience is part of a direct care program intended to improve the quality of life of people with rare diseases and their families by helping them access useful information and giving them support and guidance. Implementation of networks formed by patients, families, and professionals is also promoted. The purpose of the psychological care provided in La correspondencia sobre este artículo debe enviarse a los autores al e-mail: c.laborda@enfermedades-raras.org Promoción de la salud de las personas con enfermedades raras y sus familias: experiencia de abordaje psicosocial Health promotion in people with rare diseases and their families: an experience of psychosocial approach 2 AbordAje psicosociAl en enfermedAdes rArAs Revista Clínica Contemporánea (2019), 10, e4, 1-9 https://doi.org/10.5093/cc2019a6 © 2019 Colegio Oficial de Psicólogos de Madrid ISSN: 1989-9912 this project is to promote psychosocial normalization and inclusion of patients and families who face the complexity and burden of living with the diagnosis of a rare disease.