Webinar – Smith-Lemli-Opitz syndrome from a holistic family perspective

News for Patients, Education for Patients, Education for Professionals

MetabERN, in collaboration with healthcare professionals and patient representatives, is hosting a webinar on 18 February 2026 at 17.00 Central European Time (CET). The webinar, which is part of the MetabERN Patient Therapeutic Education Programme, is titled “Smith-Lemli-Opitz syndrome from a holistic family perspective”. The session aims to disseminate information about Smith-Lemli-Opitz syndrome (SLOS) and increase […]

Webinar – Smith-Lemli-Opitz syndrome from a holistic family perspective Read More »

MetabERN Fabry Disease Day

News, Education for Patients, Events, News for Patients

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 »

XVI International Glycogen Storage Disease (GSD) Conference

Events, Education for Patients, News for Patients

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

News for Patients, Education for Patients, Events, News

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

News, Education for Patients, Education for Professionals, News for Patients

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

Events, Education, Education for Patients, Education for Professionals, News for Patients

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

Events, Education for Patients, Education for Professionals, Networks

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

Education, Education for Patients, Education for Professionals, News, News for Patients

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”

Education for Patients, Education, Education for Professionals, Events

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

Education for Patients, Education, Events, Past Event

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

Events, Education, Education for Patients

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

Online Workshop: The Extended Neonatal Screening (ENS): Multidisciplinary Approach and Psychological Support to the Family Read More »

Brain Metabolism Workshop – 6-7 July 2023

Education, Education for Patients, Education for Professionals, Events, Networks, News, News for Patients

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 »

Webinar – Smith-Lemli-Opitz syndrome from a holistic family perspective

The MetabERN Exchange Programme is here!

European Conference on Rare Disease (ECRD 2026)

Webinar – Smith-Lemli-Opitz syndrome from a holistic family perspective

Webinar – Smith-Lemli-Opitz syndrome from a holistic family perspective

MetabERN Fabry Disease Day

XVI International Glycogen Storage Disease (GSD) Conference

Rare disease, chronic pain and mental health: a patient’s story

Chronic Pain and Mitochondrial Disease: Nanda’s Story and Expert Insights

Upcoming Webinar: Think Ammonia! Test and Diagnosis of Hyperammonaemia in time

One-Day International CTX Workshop Series

Recognising Fabry Disease in Cardiology

Online Webinar “Think Ammonia”

SanFilippo Webinar – Urgencies & Pain Management

Online Workshop: The Extended Neonatal Screening (ENS): Multidisciplinary Approach and Psychological Support to the Family

Brain Metabolism Workshop – 6-7 July 2023

Webinar – Smith-Lemli-Opitz syndrome from a holistic family perspective

The MetabERN Exchange Programme is here!

European Conference on Rare Disease (ECRD 2026)

Webinar – Smith-Lemli-Opitz syndrome from a holistic family perspective

Subscribe To Our Newsletter

MetabERN