Risks and Severity

Although some diseases are rare, the number of people suffering from them is significant. There are between 6,000 and 8,000 rare diseases affecting a total of 6 to 8% of Belgian people.

Difficulties posed by rare diseases

Due to their scarcity, rare diseases can pose certain problems: 

  • difficulties in making a diagnosis (diagnostic errors)
  • difficulties in finding an appropriate treatment 
  • the need for a multidisciplinary approach
  • the need for specialist care (rare diseases are often disabling)
  • the need for medical care, social care and assistance with day to day life.

All of these difficulties can be a source of psychological trauma for the person suffering from a rare disease and their family.   


Sciensano is responsible for processing the data from the Central Registry of Rare Diseases, which aims to centralise certain data on all Belgian patients affected by a rare disease.

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