Patients suffering from rare diseases can turn to the LUMC for specialist care. A disease is considered to be rare when fewer than 1 in 2000 people in the Netherlands suffer from it. The Ministry of Health, Welfare and Sport has recognized centres of expertise. This makes it easier for patients and healthcare providers to see whom to turn to for specialist care. Centres of expertise which comply with strict regulations can cooperate at a European level to better share their expertise.
National Centres of Expertise for Rare Diseases
At the LUMC 31 centres of expertise have been recognized by the Ministry of Health, Welfare and Sport. Continuity of care was one of the recognition criteria together with the availability of a care pathway and how quality of care is measured and improved. An important task of a centre of expertise is that knowledge and skills are concentrated and increased through for instance scientific research.
The recognition of centres of expertise for rare diseases is a big step towards better, integral care for patients with rare diseases which affect in total 6 to 8% of the population.
European Reference Networks
The LUMC participates in several European Reference Networks or ERNs. In these reference networks nationally recognized centres of expertise work together on rare diseases or disorders which require very specialized treatment as well as pooling of knowledge and means. In order to discuss the diagnosis and treatment of a patient, ERN coordinators convene a "virtual" advisory council of medical specialists from various disciplines. In this way patients will benefit from the knowledge coming from various centres of expertise.
In order to participate in a reference network strict conditions have to be complied with. Centres of expertise have to:
- apply EU criteria to rare diseases requiring specialist care;
- act as centres of expertise and research which also treat patients from other EU countries;
- ensure that the required treatment facilities are available.
LUMC participates in 8 European Reference Networks
The LUMC is the coordination centre of the European Reference Network For Rare Endocrine Disorders (Endo-ERN), headed by LUMC professor Alberto Pereira. Besides, as a centre of expertise the LUMC participates in 7 other networks.
Overview of ERNs in which the LUMC participates:
- Endo-ERN for endocrine disorders (LUMC is the coordinating centre);
- ERN BOND for bone diseases;
- ERN EYE for eye diseases;
- ERN LUNG for lung diseases;
- ERN EURACAN for tumours in adults (solid types of cancer);
- ERN EuroBloodNet for haematological diseases;
- ERN EURO-NMD for neuromuscular diseases;
- ERN-ReCONNET for connective tissue and musculoskeletal diseases.