Living with and treating rare diseases: experiences of patients and professional health care providers.

@article{Garrino2015LivingWA,
  title={Living with and treating rare diseases: experiences of patients and professional health care providers.},
  author={Lorenza Garrino and Elisa Picco and Ivana Finiguerra and Daniela Rossi and Paola Simone and Dario Roccatello},
  journal={Qualitative health research},
  year={2015},
  volume={25 5},
  pages={636-51}
}
We explored the experiences of illness of patients suffering from rare diseases and of the health professionals who care for them at the Center for the Interregional Coordination of Rare Diseases of Piedmont and Valle d'Aosta in Italy. The research was carried out between 2010 and 2011. We collected qualitative data from 22 patients and 12 health professional health care providers. The interviews were analyzed using the Colaizzi phenomenological approach. We identified five themes from the… CONTINUE READING
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