A medical resident shares insights on MetabERN’s educational programme for inherited metabolic disorders and its impact on professional development.
European Reference Networks coordinators and patient groups address EU leadership to ensure continued support for rare disease healthcare across Europe.
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 »
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 »
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 »
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 »
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 »
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 »
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 »
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 »
The Italian Anderson-Fabry Association commissioned a survey by C.R.E.A. Sanità in 2018 to evaluate various socio-economic aspects affecting the families and patients living with Fabry disease, such as the quality of life, methods of treatment, support from the National Health Service, and the costs related to the treatment of the disease. 106 patients with a confirmed diagnosis
EVALUATING THE DIRECT AND INDIRECT COSTS OF FABRY DISEASE IN ITALY Read More »
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