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Febbraio 2020

Results of the H-Care survey pilot


  1. Key findings from the survey on patients’ and carers’ experience of medical care for their rare diseases.
  2. Results of the survey regarding the development of a validated scale and of a Common Feedback Mechanism to measure healthcare experience for rare diseases in Europe.

Summary infographics on patients’ and carers’ experience of medical care for their rare diseases

Find a condensed version of the summary infographic in 23 languages below.

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