A high-level conference on EU rare diseases policy held in Warsaw on 10 April 2025 under the Polish Presidency of the EU Council.
‘Towards an EU action plan on rare diseases’ Conference Read More »
A webinar on Tyrosinemia Type 1 from a neurometabolic perspective, organised by the MetabERN AOA Subnetwork on 27 May 2025.
Tyrosinemia Type 1 – webinar hosted by the AOA Subnetwork Read More »
A European Parliament hearing on building a research and innovation ecosystem for rare diseases, organised by Brains4Brain Foundation on 29 April 2025.
Building a Research and Innovation Ecosystem for Rare Diseases Read More »
A public consultation by the European Parliament’s SANT Committee to gather insights on rare disease challenges, open until 31 March 2025.
European Parliament Consultation on Rare Diseases Read More »
A webinar exploring how physical processes regulate brain metabolism and their relevance to inherited metabolic disorders, on 24 March 2025.
Dialogue Between Physics and Metabolism in Brain Functions Read More »
A Recordati Rare Disease Foundation course on liver and liver-kidney transplantation for inherited metabolic disorders in London, 12–14 June 2025.
A webinar raising awareness on hyperammonemia, organised by Krikos Zois and Metabolic Support UK with MetabERN endorsement.
Online Webinar “Think Ammonia” Read More »
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 »
The ERICA ERN Research Conference, hosted by MetabERN in Udine from 11 to 13 December 2024, gathered 178 participants from all 24 ERNs.
ERICA ERN Research Conference hosted by MetabERN Read More »
MetabERN recently hosted its annual three-day board meeting in Budapest. This successful event brought together approximately 100 participants.
MetabERN Board Meeting 2024: updates from Budapest Read More »
The last couple of months were an eventful and enriching time for our team as we participated in three significant meetings that brought together professionals dedicated to improving care for patients with inherited metabolic disorders (IMDs). Each meeting provided a unique opportunity to engage with experts and patient representatives, share knowledge, and discuss critical topics for
Highlights from Our Impactful Month of Collaborations and Meetings Read More »
The DECODE Project aims to improve the diagnosis of inherited metabolic disorders through collaborative research and innovative methodologies.
DeCODe Project Kick-Off: supporting Paediatric and Orphan Device Development Read More »
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