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[Is there a place in primary care for rare diseases? The case of fibrodysplasia ossificans progressiva]. / ¿Hay lugar en atención primaria para las enfermedades poco frecuentes? El caso de la fibrodisplasia osificante progresiva.
Morales-Piga, Antonio; García Ribes, Miguel; Arribas Álvaro, Pilar; Casado Álvaro, Carlos; Posada de La Paz, Manuel; Bachiller-Corral, Javier.
Afiliación
  • Morales-Piga A; Instituto de Investigación de Enfermedades Raras (IIER), Instituto de Salud Carlos III, Madrid, Spain. amorales@isciii.es
Aten Primaria ; 45(6): 324-8, 2013.
Article en Es | MEDLINE | ID: mdl-23369643
Fibrodysplasia ossificans progressiva is one of the most devastating constitutional diseases of the bone, and may be a valid example to establish the role of Primary Care in the care of rare diseases. Although rare diseases usually present with marked anomalies, they can mimic signs and symptoms of common disorders, with the risk of going unnoticed. For this reason, all health professionals should proceed with a reasonable suspicion when confronted with a patient with an apparently common disease with atypical symptoms and a non-conventional progress. The care given by the Primary Care team along with other health care services are fundamental in the integrated and individualised follow-up. The quality of care in rare diseases must not be inferior to that provided to the other chronic diseases, since, besides being a requirement of justice and fairness, these patients are, in essence, the "paradigm of chronicity".
Asunto(s)

Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Atención Primaria de Salud / Miositis Osificante Límite: Humans Idioma: Es Revista: Aten Primaria Año: 2013 Tipo del documento: Article País de afiliación: España

Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Atención Primaria de Salud / Miositis Osificante Límite: Humans Idioma: Es Revista: Aten Primaria Año: 2013 Tipo del documento: Article País de afiliación: España