On the occasion of Fabry Awareness Month, in April, the Antwerp University Hospital (UZA) and MetabERN will host a Fabry Disease Day event on 28 March 2026 in the Maison de la Poste, Brussels, Belgium. International experts, including Dr. Uma Ramaswami (Royal Free Hospital), Dr. Guy Hans (Antwerp University Hospital), and Dr. Valentine Gillion (Cliniques universitaires […]
MetabERN Fabry Disease Day Read More »
The Spanish Association of GSD Patients (AEEG), member of our board of patient organisations, has recently organised the 16th International Conference on GSD. The conference was held with great success on October 3–4, 2025, at the University Hospital of Getafe. The event brought together healthcare professionals, researchers, patients, and families, reaffirming its role as one
XVI International Glycogen Storage Disease (GSD) Conference Read More »
What happens when your body is under siege, but the world can’t see the battle?Living with Mitochondrial Encephalomyopathy with Lactic Acidosis and Stroke-like episodes (MELAS) syndrome means navigating a rare, often invisible disease that reshapes every aspect of life. This Global Mental Health Day (October 10), we’re honored to share a patient’s story in a
Rare disease, chronic pain and mental health: a patient’s story Read More »
September shines a light on Mitochondrial Disease Awareness and Pain Awareness Month. Mitochondrial diseases impact around 1 in 5,000 individuals and often remain underdiagnosed and misunderstood. In recognition of Mitochondrial Disease Awareness Week (September 15–21) and Pain Awareness Month, we celebrate resilience by sharing an inspiring patient story alongside an expert-led presentation focused on chronic
Chronic Pain and Mitochondrial Disease: Nanda’s Story and Expert Insights Read More »
Elevated ammonia levels in the blood may result from various inborn errors of metabolism and can cause neurological impairment or mortality. This represents a time-sensitive medical situation, and prompt testing, diagnosis and management are essential to prevent life threatening events. On September 18 at 17.00 CEST, MetabERN is hosting a webinar titled “Think Ammonia! Test
Upcoming Webinar: Think Ammonia! Test and Diagnosis of Hyperammonaemia in time Read More »
The CTX International Workshop Series will be held on Monday, September 1 in Kyoto, Japan as a satellite meeting, prior to the 2025 International Congress of Inborn Errors of Metabolism (ICIEM) taking place from 2 to 6 September 2025. On behalf of the CTX Alliance and the organizing committee, it is our pleasure to invite you
One-Day International CTX Workshop Series Read More »
As we wrap up Fabry Disease Awareness Month, the Antwerp University Hospital UZA, in collaboration with MetabERN, is excited to offer two free video lectures focused on recognizing Fabry disease in cardiology. These sessions are designed to empower cardiologists, general practitioners, internists, and specialists in metabolic diseases with the latest insights and knowledge from leading
Recognising Fabry Disease in Cardiology Read More »
Register for the Online Webinar “Think Ammonia” hosted by the Greek patient organisation Krikos Zois in collaboration with Metabolic Support UK and endorsed by MetabERN. Go to the registration page. Ammonia is a metabolite that is present in all living organisms. However, its potential danger as a silent predator is less well-known. We are pleased
Online Webinar “Think Ammonia” Read More »
The SanFilippo Fighters Patient Organisation and the European Reference Network for Inherited Metabolic Diseases (MetabERN) invite you to the first session of an exciting webinar series exploring various aspects of SanFilippo Syndrome. This webinar offers a unique opportunity to learn from the following leading experts in the field: Dr. Serena GasperiniIRCCS San Gerardo dei Tintori
SanFilippo Webinar – Urgencies & Pain Management Read More »
The Mariani Foundation Centre for Hereditary Metabolic Diseases of Childhood in Monza (Italy) is organizing the workshop “The Extended Neonatal Screening (ENS): Multidisciplinary Approach and Psychological Support to the Family” which will be held online on 8 April and on 15 April 2024. The Workshop aims: The Workshop will be conducted in Italian and receive accreditation
From 6 to 7 July 2023, the MetabERN centre Sant Joan de Déu Hospital in Barcelona will host the Workshop: “Brain Metabolism Workshop: from rare diseases to common biological pathways”. This will be an excellent occasion for patients, clinicians, and researchers for sharing knowledge and new ideas on brain metabolism as a transversal approach for
Brain Metabolism Workshop – 6-7 July 2023 Read More »
We are delighted to announce the Cross ERN Workshop (MetabERN – ERN TransplantChild – ERN RARE-LIVER) which will be held in Coimbra, Portugal on 8 to 9 June 2023. The workshop is aimed at paediatric, adult physicians, patient associations and patient advocacy organizations from three European Reference Networks and is supported by the EJP RD Support scheme for Networking
Liver Transplant for Inborn Errors of Metabolism – Sharing Knowledge Across ERNs Read More »
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