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Increasing the person-centered care of patients and their families living with rare diseases. An Analysis and Commentary on ‘Home-based service for enzyme replacement therapy in lysosomal storage disorders: patient reported outcomes’. Tirelli, P., Giona, F., Di Rocco, M., Cassinerio, E., Pieruzzi, F., Pisani, A., Veroux, M., on behalf of the Tutor Working Group & Giudici, G. A. and Cipriani, F. (2018). European Journal for Person Centered Healthcare 6 (4) 669–674

Andrew Miles, Jonathan Elliot Asbridge


No abstract


Accompaniment, clinical options, constellation of symptoms, diagnosis, economic benefits, enzyme replacement therapy, epidemiology, equity of access, freedom to choose, home-based care, hospital-based therapy, humanistic framework, lysosomal storage disea

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