Numbers

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.

Rare diseases in general

  • Between 6,000 and 8,000 rare diseases have been identified.
  • 80% of rare diseases are genetic.

Rare diseases in Belgium

  • It is estimated that 6 to 8% of the population in Belgium is affected by a rare disease (660,000 to 880,000 people affected by rare diseases)
  • Each of these rare diseases will affect just one or a few people and a maximum of around 5,000 people.

Rare diseases in Europe

It is estimated that 6 to 8% of the population in Europe is affected by a rare disease (27 million to 36 million people affected by rare diseases).

 
 

Sciensano is responsible for several aspects included in the Belgian plan for Rare Diseases such as keeping the Orphanet database for Belgium up-to-date and processing the data from the Central Registry of Rare Diseases. This registry aims to centralise specific data on all Belgian patients affected by a rare disease. The Belgian Genetic Test Registry has been created which functions as an inventory of genetic tests available in Belgium to increase the quality management in the Centres for Human Genetics. Sciensano also hosts several disease-specific registries.

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