[Rare disease: centre of expertise or care guideline?]

In the Netherlands, recommendations for managing rare diseases are developed by multidisciplinary teams working together in centres of expertise who form the core of the health care system for these patients. This is an excellent option, in which also transition from care for children to care for adults can be warranted. However, in a very rare and complex disease where the patient group consists of only a few patients, centres of expertise will not be established. A disease-specific and individual care standard should be developed for these patients which defines the special needs for this disease, patient's medical condition and best options for health care.