Pulmonary fibrosis

X-ALD

Lysosomal storage diseases

Urea cycle disorders - organic aciduria

Vasculitis

About the project

About the project
With ‘Expertise mapped’ we visualise the organisation of care for rare diseases from the patients’ perspective. It generates an overview of where expertise for rare diseases can be found, how centres of expertise are organised and what the perceptions, needs and wishes of patients with rare diseases are.

What is a knowledge map?

What is a knowledge map?
Knowledge maps visualise the organisation of care and the experiences of patients with healthcare. The knowledge map is divided in two sections: the experiences of patients and the organisation of care.



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