Policy vision on centers of expertise for rare diseases 2025

An expertise center for a rare disease is often a facility within a hospital that specializes in a specific rare condition. To gain recognition as an expertise center, an application can be submitted to the Ministry of Health, Welfare, and Sport (VWS). With this recognition, an institution can join a European Reference Network (ERN), allowing knowledge and experience about the rare condition to be shared across Europe. The Ministry of VWS, together with the Netherlands Federation of University Medical Centers (NFU), has established a procedure to evaluate applications for recognition as an expertise center. This process assesses whether the applying institution meets specific criteria.

On December 3, the Dutch Ministry of Health, Welfare, and Sport (VWS) published the new 2025 policy vision for expertise centers for rare diseases (ECZA). Expertise centers are of paramount importance for patients with rare conditions.

The designation of these expertise centers must be conducted with care. In recent years, a large number of patient organizations have expressed significant criticism regarding the design and implementation of the procedure. Unfortunately, the 2025 policy vision does not address the problems experienced and places patients with rare conditions at an even greater disadvantage.

Together with several Dutch patient organizations, we have filed a lawsuit with the Court.