There are thousands of known rare diseases. Around 7,000 rare diseases have been discovered to date and new diseases are still being described in the medical literature on a regular basis.

In Belgium, it takes on average 4.9 years to reach a diagnosis of a rare disease. For more known diseases with well-established genetic tests due to scientific knowledge on the causes, this can be much shorter. However, patients and their families often face a difficult journey, referred to as the diagnostic odyssey, and a large proportion of patients remain undiagnosis. 

In 2016, seven university hospitals were established as a Function Rare Diseases. At the end of 2019, IPG (l’Institut de Pathologie et de Génétique) in collaboration with the Grand Hôpital de Charleroi, was added to this list. These are hospitals that meet certain quality standards and have a proven framework and infrastructure. The Royal Decree (available in Dutch and French) in this regard was published in August 2014. The establishment of this was already included in the Belgian Plan for Rare Diseases (Action 9) in 2013. Function is a legal term (such as “urgent care function” or “intensive care function”) and designates the set of activities that support the care and treatment of the patient and while having access to all disciplines in the hospital.

For questions and information related to diagnoses of rare diseases, please contact one of the eight Functions Rare Diseases in Belgium:

  1. Antwerp University Hospital (more info on the Rare Diseases web page of the Antwerp University Hospital)
  2. Brussels University Hospital (more info on the Rare Diseases Reference Centre web page of the Brussels University Hospital)
  3. Ghent University Hospital (more info on the Function Rare Diseases web page of the Ghent University Hospital
  4. Leuven University Hospital (more info on the the Rare Diseases web page of the Leuven University Hospital)
  5. Cliniques Universitaires Saint-Luc – UCL Brussels (more info on the website of the Rare Diseases Institute of Cliniques universitaires Saint-Luc)
  6. CHU de Liège (more info on the Rare Diseases Centre web page of the Liège University Hospital
  7. Hôpital Universitaire de Bruxelles (H.U.B.) (more info on the Rare Disease web page of Hôpital Universitaire de Bruxelles)
  8. Grand Hôpital de Charleroi in collaboration with IPG (l’Institut de Pathologie et de Génétique) (more info on the Function Rare Diseases web page of Grand Hôpital de Charleroi)

More information about living with a rare disease in Belgium can be found on the website of RaDiOrg (available in Dutch and French), the Belgian umbrella organisation for rare disease patients.

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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