The last couple of months were an eventful and enriching time for our team as we participated in three significant meetings that brought together professionals dedicated to improving care for patients with inherited metabolic disorders (IMDs). Each meeting provided a unique opportunity to engage with experts and patient representatives, share knowledge, and discuss critical topics […]
ERNDIM is an independent, not-for-profit foundation that has been providing External Quality Assurance (EQA) schemes for inborn errors of metabolism since 1994. Initially established as a European organization, ERNDIM has expanded to include over 400 participants across 62 countries, with approximately 41% of participants based outside Europe. The primary mission of ERNDIM is to reach […]
The European commission co-funded DeCODe consortium held its kick-off meeting in Brussels on 9-10 September 2024. This two-year ground-breaking initiative aims to catalyse innovation and address the unique healthcare needs of people living with rare diseases (PLWRD), specifically children. This collaborative group, comprising clinicians, researchers, industry experts, and regulatory authorities, will develop a platform for […]
Get ready for the upcoming MetabERN Board Meeting! This year the meeting will be held from 27th to 29th November in the beautiful city of Budapest, Hungary. It will be a valuable opportunity for our network to come together, exchange insights, and work towards our shared mission of enhancing collaborative care and elevating healthcare standards […]
As part of the EU4Health programme, the European Commission is organizing 10 national workshops to raise awareness about patients’ rights in cross-border healthcare (CBHC) and the European Reference Networks (ERNs) for rare diseases, as outlined in Directive 2011/24/EU. Following successful workshops in Malta and Italy on 29 February and 11 April, respectively, a third workshop […]
The 1st “Connection Between Physics and Metabolism in Brain Function” symposium is scheduled to take place on July 5th, 2024, at the Sant Joan de Déu Barcelona Children’s Hospital in Spain. The event welcomes online participation as well. This symposium will provide valuable insights into the physics underlying metabolic processes in the brain, bringing together […]
European Reference Networks (ERN) help professionals and centres of expertise in different countries to share knowledge. ERNs apply EU criteria to tackle rare diseases requiring specialised care, serve as research and knowledge centres treating patients from other EU countries and ensure the availability of treatment facilities where necessary.
MetabERN is a European non-profit network established by the EU to facilitate access to the best available care and address the needs across the border of all patients and their families affected by inherited metabolic rare diseases. MetabERN is driven by the principle of patient-centred care to provide its services, aiming to improve patients’ and families’ quality of life.
MetabERN aims to connect the most specialised centres on inherited metabolic rare diseases to promote prevention, accelerate diagnosis, and improve care standards across Europe for patients living with inherited metabolic rare diseases. MetabERN is entirely led by patients and experts. By combining patient experience and expert knowledge from across the EU, we aim to capture the most innovative medical advances and tailor them to patients’ needs.
If you are a patient or a healthcare professional and you would like know more about how MetabERN can help you, get in touch with us filling the contact us form.
The online course made by MetabERN members in collaboration with the Coordination Office is addressed to medical residents, graduate students, general practitioners, and various medical specialists.
The overall objective of the programme is to create and train a new class of professionals with a scientific background and interest in Inherited Metabolic Diseases and to provide them with expert knowledge and practical experience in the phenotypic spectrum, diagnostic and clinic work-up, treatment and long-term management of these diseases.
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