Rare diseases
Patients with a rare disease must receive proper and specific care: a rapid diagnosis followed by treatment in care units with staff trained in these rare diseases. The mission of the Rare Diseases Function (8 in Belgium) is to coordinate, with teams with the required expertise, the care pathways and scientific research and training projects of all the professionals involved in providing an adapted and constantly evolving care.
What is a rare disease?
In the European Union a disease is designated rare when it affects fewer than 1 person in 2000. As there are more than 7000 rare diseases it is in fact a quite frequent problem. While each one is rare or very rare individually, together they nevertheless affect about 5% of the population. Not all rare diseases are genetic in origin, or identified as such at present. This is the case, for example, for autoimmune diseases, congenital malformations and rare cancers. The presentation and development of rare diseases are very variable and this is true of any one rare disease. Patients therefore need specialised multidisciplinary care in line with their specific medical, paramedical, psychological, social and other needs.
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