MetabERN Fabry Disease Day
MetabERN and UZA host a Fabry Disease Day in Brussels on 28 March 2026. Focus sessions, expert talks and workshops. Free registration.
MetabERN Fabry Disease Day Read More »
Education for Patients
XVI International Glycogen Storage Disease (GSD) Conference
The XVI International Glycogen Storage Disease Conference was held in Getafe on 3-4 October 2025, organised by AEEG. Watch the recorded sessions.
XVI International Glycogen Storage Disease (GSD) Conference Read More »
Rare disease, chronic pain and mental health: a patient’s story
A video testimonial for World Mental Health Day. A patient living with MELAS syndrome shares her journey with chronic pain and mental well-being.
Rare disease, chronic pain and mental health: a patient’s story Read More »
Chronic Pain and Mitochondrial Disease: Nanda’s Story and Expert Insights
A patient story on living with MELAS syndrome and chronic pain, alongside an expert presentation on pain management strategies.
Chronic Pain and Mitochondrial Disease: Nanda’s Story and Expert Insights Read More »
Upcoming Webinar: Think Ammonia! Test and Diagnosis of Hyperammonaemia in time
A MetabERN webinar on hyperammonaemia diagnosis, testing and management. With expert presentations and insights from Metabolic Support UK.
Upcoming Webinar: Think Ammonia! Test and Diagnosis of Hyperammonaemia in time Read More »
One-Day International CTX Workshop Series
A one-day workshop on cerebrotendinous xanthomatosis (CTX) hosted by the CTX Alliance in Kyoto, Japan on 1 September 2025.
One-Day International CTX Workshop Series Read More »
Recognising Fabry Disease in Cardiology
Free video lectures by UZA and MetabERN on recognising Fabry disease in cardiology, covering genetic aspects and clinical red flags for cardiologists.
Recognising Fabry Disease in Cardiology Read More »
Online Webinar “Think Ammonia”
A webinar raising awareness on hyperammonemia, organised by Krikos Zois and Metabolic Support UK with MetabERN endorsement.
Online Webinar “Think Ammonia” Read More »
SanFilippo Webinar – Urgencies & Pain Management
A webinar on emergency care and pain management for Sanfilippo Syndrome patients, hosted by Sanfilippo Fighters and MetabERN.
SanFilippo Webinar – Urgencies & Pain Management Read More »
Online Workshop: The Extended Neonatal Screening (ENS): Multidisciplinary Approach and Psychological Support to the Family
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 for
Brain Metabolism Workshop – 6-7 July 2023
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 the
Brain Metabolism Workshop – 6-7 July 2023 Read More »
Liver Transplant for Inborn Errors of Metabolism – Sharing Knowledge Across ERNs
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 initiatives
Liver Transplant for Inborn Errors of Metabolism – Sharing Knowledge Across ERNs Read More »
