European Reference Networks coordinators and patient groups address EU leadership to ensure continued support for rare disease healthcare across Europe.
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 »
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 »
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 »
International experts gather in Jerusalem to advance research and clinical collaborations in Cerebrotendinous Xanthomatosis.
2023 CTX International Scientific Meeting in Jerusalem Read More »
A new research project explores Smith-Lemli-Opitz syndrome’s lifelong impact, inviting European families to share their experiences.
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 »
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 »
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 »
MetabERN’s European survey on pregnancy and family planning for rare disease patients and clinicians aims to improve healthcare standards.
Pregnancy and Family Planning in rare diseases: a survey for patients and clinicians Read More »
University Hospital of Santiago de Compostela demonstrates the effective use of CPMS platform for rare metabolic disease management.
An online meeting on DCDEs curation for clinicians and medical professionals will take place on 9 December 2021 at 16:00 CET.
EJP RD & ERICA meeting – Domain specific Common Data Elements (DCDEs) Curation Read More »
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