• ‘Expertise mapped’ strengthens the position of patients and patient organisations by bundling and showing the expertise for rare diseases from patients’ perspective;
  • Knowledge maps show where expertise is located and how patients care is organised;
  • If there are more centres of expertise for the same disease, knowledge maps give patients the opportunity to choose what fits their needs;
  • Knowledge maps can show healthcare professionals to what centre of expertise they can refer their patient or where they can ask their questions about the treatment;
  • The online survey provides insight into patients’ perspective on proper care and their actual care needs;
  • Knowledge maps give centres of expertise the opportunity to show their expertise;
  • Knowledge maps give centres of expertise the opportunity to improve and customize their healthcare, by providing them patients’ experiences and their needs and wishes.
  • The more knowledge maps published, the stronger the patients’ voice.


Learn more about:
Experiences of patients
Experiences of patient organisations
Experiences of experts

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