The term “rare diseases” is used to refer to diseases that occur in a relatively small number of people. They often involve specific problems because of the fact that they are rare.
Efforts are being made to improve the situation for these patients as part of the Belgian Plan for Rare Diseases (which can be consulted in Dutch or in French). Sciensano is working on a number of actions from the Plan:
- Action 1: improved financing of tests for the diagnosis and follow-up of rare diseases, carried out in Belgium or abroad (website under construction)
- Action 2: quality management at the centres for Human Genetics (website under construction)
- Action 16: Central Registry of Rare Diseases
The Central Registry of Rare Diseases centralises certain data on patients with rare diseases in Belgium, with the aim of improving care and supporting research.
- Action 17: Orphanet Belgium
Anyone looking for further information about one or more of the 7000-8000 known rare diseases can visit the international Orphanet.
Rare diseases are diseases that occur in fewer than 5 in 10000 people. You can read more about this here.
Central Registry of Rare Diseases
The Central Registry of Rare Diseases centralises certain data on all Belgian patients with a rare disease. Click here to find out more about the Central Registry of Rare Diseases.