Working together is knowledge
The main goal of the Center for Lysosomal and Metabolic Diseases is to improve the future of patients with a metabolic disorder. We do this, among other things, by cooperating with various parties both nationally and internationally. The Center for Lysosomal and Metabolic Diseases is affiliated with various networks with the aim of increasing the knowledge of metabolic diseases. By sharing knowledge with each other, we learn to better understand metabolic disorders. This leads to the improvement of existing treatments and the development of new treatments.
In addition to collaborating with patient organizations, we also work closely with other metabolic centers in the Netherlands and around the world. On this page you will find an overview of all the networks in which we are active.
United for Metabolic Diseases
The Center for Lysosomal and Metabolic Diseases has united on a national level with the other 5 metabolic centers in the Netherlands and the patient association VKS. By working together, we try to improve the future prospects for patients with metabolic diseases and their families. Because metabolic diseases are often recognized (too) late or sometimes not at all, the doctors and researchers of United for Metabolic Diseases are committed to a better, faster and earlier diagnosis and the best treatment for children and adults with a metabolic disorder.
European Reference Networks
About 30 million people in the European Union are living with a rare disease. The European Union is committed to healthcare systems that provide high-quality and cost-effective care. However, for rare conditions, this is proving to be particularly difficult because of the complex care that rare conditions need and the lack of knowledge about the different disorders. For this reason, the European Union has decided that each member state must have a national plan for rare diseases. In 2014, the Ministry of Health, Welfare and Sport therefore asked the Dutch Federation of University Medical Centers (NFU) to set up an approval system to recognize centers of expertise for rare diseases. In 2014, the Center for Lysosomal and Metabolic Diseases received the recognition as a nationally recognized center of expertise. To unite national centers of expertise in Europe, the European Union created 24 reference networks in 2016. Each network focuses on a specific group of rare diseases. The goal is to gather all the knowledge and resources to improve the daily lives of 30 million EU citizens.
The Center for Lysosomal and Metabolic Diseases is a member of 2 European Reference Networks. MetabERN (network for metabolic disorders) and EURO-NMD (network for rare neuromuscular disorders).
The Dutch association to promote the research on inherited metabolic disorders (ESN)
The ESN association is committed to research into inherited metabolic disorders. Almost all metabolic specialists in the Netherlands and Belgium ( (clinicians, laboratory specialists and researchers) are members of the ESN. So are the metabolic specialists of the Center for Lysosomal and Metabolic Diseases. The members of the ESN meet twice a year at the spring and fall meetings. In addition, the continuing education committee organizes annual courses for medical specialists, clinical chemists and other laboratory specialists. By bringing all members together, knowledge is shared and new cooperative initiatives are created, with the aim of improving care for patients with metabolic disease.
www.esnlt.org (Dutch only)
Society for the Study of Inborn Errors of Metabolism (SSIEM)
The SSIEM, like the ESN, is an association dedicated to the research on inherited metabolic diseases. The SSIEM has members from all over the world from different disciplines (clinicians, laboratory specialists, dieticians, researchers, etc.). The SSIEM organizes educational activities and the annual SSIEM symposium which is held every year. In 2019, the Center for Lysosomal and Metabolic Diseases hosted the annual SSIEM symposium. The symposium took place at de Doelen in Rotterdam and attracted more than 3,000 visitors from 86 countries.
Dutch Neuromuscular Center
The Dutch Neuromuscular Center is an association of all neuromuscular centers in the Netherlands. The center provides a platform for experimental and clinical research groups of the university medical center with the aim of improving the quality of life and treatment of patients with a neuromuscular disorder. The specialist from the Pompe Center, are closely involved in the activities of the Dutch Neuromuscular Center. Two of our specialists, Dr. E. Brusse and dr. N. van der Beek both serve on the executive board.
www.spierziektencentrum.nl (Dutch only)