Questionnaire on the Treatment of Primary Mitochondrial Disorders with Vitamins and Cofactors
MetabERN launches a worldwide survey for PMD specialists to document vitamin and cofactor treatments, aiming to develop standardized recommendations.
Networks
Positive Results for MetabERN and ASUFC in the Five-Year Evaluation Process of European Reference Networks (ERN)
The European Reference Network for Rare Metabolic Diseases and its coordinating centre receive outstanding results in the ERN five-year evaluation process.
20th Annual WORLDSymposium – February 4-9, 2024
The annual scientific meeting in San Diego brings together global experts in lysosomal diseases to share advances in research and clinical developments.
20th Annual WORLDSymposium – February 4-9, 2024 Read More »
Call on the EU institutions and EU Member States’ governments to stand by the European Reference Networks
European Reference Networks coordinators and patient groups address EU leadership to ensure continued support for rare disease healthcare across Europe.
Conference on Rare diseases and European reference networks in Bilbao
The Spanish EU Presidency conference in Bilbao addresses rare diseases and European Reference Networks while featuring an ALS-focused event.
Conference on Rare diseases and European reference networks in Bilbao Read More »
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
Brain Metabolism Workshop – 6-7 July 2023 Read More »
6th World Conference on CDG – 21-23 July 2023
Global experts and families gather in Portugal to discuss advances in Congenital Disorders of Glycosylation treatment and care.
6th World Conference on CDG – 21-23 July 2023 Read More »
2023 CTX International Scientific Meeting in Jerusalem
International experts gather in Jerusalem to advance research and clinical collaborations in Cerebrotendinous Xanthomatosis.
2023 CTX International Scientific Meeting in Jerusalem Read More »
Patient representatives for Smith-Lemli-Opitz syndrome are looking for European families
A new research project explores Smith-Lemli-Opitz syndrome’s lifelong impact, inviting European families to share their experiences.
MetabERN Board meeting in Prague, 13-15 October 2022
The MetabERN Board reunites in Prague for its first face-to-face meeting since the pandemic, discussing key developments in rare diseases.
MetabERN Board meeting in Prague, 13-15 October 2022 Read More »
First Italian National Meeting on Rare Inherited Metabolic Diseases in Adults
A landmark national meeting in Udine addresses the growing challenges of managing inherited metabolic diseases in the adult population.
First Italian National Meeting on Rare Inherited Metabolic Diseases in Adults Read More »
SSIEM Annual Symposium 2022
The SSIEM Annual Symposium 2022 will focus on metabolism and genetics, fostering discussions and networking in Freiburg from 30 August to 2 September.
SSIEM Annual Symposium 2022 Read More »
