Expertise Center for Rare Disorders (ECZA)
European Reference Networks (ERNs)
The LUMC participates in various European Reference Networks (ERNs). In these reference networks, nationally recognized centers of rare diseases work together on rare diseases or conditions that require highly specialized treatments and a pooling of knowledge and resources. To discuss a patient's diagnosis and treatment, ERN coordinators convene a "virtual" advisory board of medical specialists from various disciplines. This way, knowledge from several centers of expertise is combined for the benefit of the patient.
…The LUMC participates in various European Reference Networks (ERNs). In these reference networks, nationally recognized centers of rare diseases work together on rare diseases or conditions that require highly specialized treatments and a pooling of knowledge and resources. To discuss a patient's diagnosis and treatment, ERN coordinators convene a "virtual" advisory board of medical specialists from various disciplines. This way, knowledge from several centers of expertise is combined for the benefit of the patient.
LUMC participates in 15 European reference networks
The LUMC is the coordinator of the ERN affiliated registries Endo-ERN and ERN-BOND. The LUMC is also a participating expertise center in another 14 networks.
International Rare Diseases Research Consortium (IRDiRC)
IRDiRC (International Rare Diseases Research Consortium) is een consortium met meer dan 40 lidorganisaties uit alle werelddelen. De visie van IRDiRC is dat alle mensen met een zeldzame ziekte een juiste diagnose én een behandeling moeten krijgen binnen één jaar nadat zij met medische klachten bij een arts zijn gekomen. Prof. Aartsma-Rus, hoogleraar translationele genetica in het LUMC, is deelnemer van de IRDiRC Therapies Scientific Committee.
