The objective of Rare Disease Day is to raise awareness amongst the general public, researchers, health professionals and policy makers about these rare diseases and the impact on patient’s lives.
About 1 in 20 people will live with a rare disease at some point. The objective of Rare Disease Day is to raise awareness amongst the general public, researchers, health professionals and policy makers about these rare diseases and the impact on patient’s lives. Rare Disease Day takes place on the last day of February each year.
There are 23 reference networks for rare diseases in Europe. Erasmus MC is a partner in 17 of these networks, making them the most active of all European care institutions. Centers of expertise for rare diseases must comply with EU standards for them to be included in European Reference Networks (ERNs). These are groups where highly specialised providers pool their knowledge to enable them to work together more closely. This EU recognition identifies the centers of expertise throughout Europe for the treatment of patients with rare diseases.
Two of the networks will be coordinated by Erasmus MC: CRANIO by Prof. Irene Mathijssen and ERNICA by Prof. René Wijnen. "This assessment at a European level is a good basis", says Wijnen: "It is an official recognition of our centers of expertise by an independent body."
Wijnen is emphatic about what makes the recognition of the networks special: "The entire process was initiated by patients' organisations across Europe. We have achieved this by working closely together with them. Only by working together with patients can we facilitate improvement. Here in Rotterdam, we are usually not very quick to congratulate ourselves, but I think we most certainly deserve a complement now. We are leading in Europe in the field of rare diseases, and this has been confirmed by this recognition. Furthermore, the collaboration between the Erasmus MC centers of expertise has also improved, thanks to this accreditation process. This will ultimately also benefit the patient."