Expertise Center for Rare Disorders (ECZA)
National Expertise Centers for Rare Disorders
The LUMC has 37 Centers for Rare Diseases which are recognized by the Ministry of Health, Welfare and Sport. The continuity is one of the key components for examination in the recognition of a a Center for Rare Diseases. But another component, for example, involves whether a certain care path is available and how the quality of care is measured and improved. An important task of an expertise center is that knowledge and skills are bundled and expanded, including through scientific research.
The allocation of centers of excellence for rare diseases is a major step towards better and integrated care, treatment, and quality of life for patients with rare diseases, which affect a total of 6 to 8% of the population.
Below you will find a list with more information about the 37 expertise centers for rare disorders in the LUMC.
Information about European Reference Networks (ERNs)
Nationally recognized Centers of Rare Diseases collaborate on a European level in so called European Reference Networks (ERNs). ERNs are virtual networks and aim to tackle complex or rare diseases that require highly specialized treatments and a pooling of knowledge and resources. View all ERNs below.
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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 a consortium with more than 40 member organizations from all over the world. IRDiRC’s vision is that all people with a rare disease should receive a correct diagnosis and treatment within one year after visiting a doctor for medical complaints. Prof. Aartsma-Rus, professor of translational genetics at the LUMC, is a member of the IRDiRC Therapies Scientific Committee.
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