In the Netherlands, a disease is classified as rare if it affects fewer than 5 in 10,000 members of the general population in Europe. In total, there are about 8,000 known rare diseases. People with a rare disease have often waited for a diagnosis for a long time: on average about six years, during which they will have seen more than five medical specialists.
Navigating where to find the best care
We frequently hear from our patients that they have had to navigate where to find the right care or appropriate treatment. More than half of the patients with a rare disease have initially been misdiagnosed. Patients have also felt misunderstood when their symptoms have been unexplained. It is therefore important that information on rare diseases is easy to find; with a clear overview of where disease-specific knowledge can be found, in the Netherlands or in Europe.
Overview
The Ministry of Health, Welfare and Sport would like patients and healthcare professionals to be able to easily determine which center of expertise is most suitable; for patients to receive a diagnosis, for multidisciplinary healthcare, paramedical support or hospital treatment. Providing a complete list of possible centers is a major step towards offering better, comprehensive care for patients with rare diseases.
Kindly note that the links to our Centers of Expertise currently direct to Dutch webpages. English content will be made available in the future.
