Multidisciplinary approach for patients with nephropathic cystinosis: model for care in a rare and chronic renal disease
J. bras. nefrol; 41 (1), 2019
Abstract Care for patients with chronic and rare diseases is complex, especially considering the lack of knowledge about the disease, which makes early and precise diagnosis difficult, as well as the need for specific tests, sometimes of high complexity and cost. Added to these factors are difficulties i...
Protocolos Clínicos, Cistinosis/complicaciones, Cistinosis/diagnóstico, Cistinosis/terapia, Cistinosis/psicología, Diálisis, Síndrome de Fanconi/complicaciones, Síndrome de Fanconi/diagnóstico, Síndrome de Fanconi/tratamiento farmacológico, Síndrome de Fanconi/psicología, Fallo Renal Crónico/etiología, Trasplante de Riñón, Grupo de Atención al Paciente, Embarazo, Enfermedades Raras/complicaciones, Enfermedades Raras/diagnóstico, Enfermedades Raras/tratamiento farmacológico, Enfermedades Raras/psicología, Diálisis Renal, Resultado del Tratamiento