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.
DCTEP Learners’ Stories: What does an educational programme on IMDs have to offer to young healthcare professionals?
A medical resident shares insights on MetabERN’s educational programme for inherited metabolic disorders and its impact on professional development.
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.
MOOC From Lab to Clinic: Translational Research for Rare Diseases
The French Foundation for Rare Diseases launches an online course exploring translational research pathways from drug discovery to clinical trials.
MOOC From Lab to Clinic: Translational Research for Rare Diseases Read More »
DCTEP learners’ stories: How does an e-learning on IMDs really look like?
A Romanian physician discusses her experience with MetabERN’s educational programme and its practical impact on managing metabolic disorders.
DCTEP learners’ stories: How does an e-learning on IMDs really look like? Read More »
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 »
Swedish SLOS Conference – October 2, 2023
A collaborative conference on Smith-Lemli-Opitz syndrome in Gothenburg brings together families and medical professionals with both onsite and online access.
Swedish SLOS Conference – October 2, 2023 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 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 »
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 »
Gyrate Atrophy of the Choroid and Retina – International hybrid symposium
Amsterdam UMC hosts a hybrid symposium on gyrate atrophy, bringing together experts and families for research updates and discussion.
Gyrate Atrophy of the Choroid and Retina – International hybrid symposium Read More »
Postgraduate Course on Lysosomal Storage Disorders in Nierstein
Young healthcare professionals can enhance their knowledge of rare metabolic diseases at this interactive course in Nierstein, Germany.
Postgraduate Course on Lysosomal Storage Disorders in Nierstein Read More »
