The MetabERN Amino and Organic Acids (AOA) Subnetwork is organising a webinar on Tyrosinemia Type 1, viewed from a neurometabolic perspective, on May 27, 2025, from 13:00 to 15:30 CEST. The webinar will be hosted by the Frambu Centre for Rare Diseases. The session will begin with Prof. Anibh Das providing an overview of Tyrosinemia […]
Tyrosinemia Type 1 – webinar hosted by the AOA Subnetwork Read More »
The Brains4Brain foundation recently announced an important initiative dedicated to tackling a major challenge in healthcare: creating a comprehensive ecosystem for rare diseases. To launch this initiative, the foundation is hosting a preparatory event designed to present its project to policymakers, including Members of the European Parliament (MEPs), European Commission representatives, and officials from Member
Building a Research and Innovation Ecosystem for Rare Diseases Read More »
On 28 February 2025, the newly established Committee on Public Health (SANT) of the European Parliament launched an important public consultation focused on rare diseases. The objective of this consultation is to inform the Committee’s upcoming initiatives by enhancing understanding and knowledge of the challenges encountered by individuals affected by rare diseases. Additionally, it seeks
European Parliament Consultation on Rare Diseases Read More »
The second webinar of our series “Brain Metabolism Dialogues” is taking place on Monday 24 March at 17.00 CET. Prof. Fanny Mochel from the Pitié-Salpêtrière Hospital in Paris will be the speaker of the webinar titled “Dialogue Between Physics and Metabolism in Brain Functions”. Molecular biology has transformed cellular biology, identifying genes linked to neurological
Dialogue Between Physics and Metabolism in Brain Functions Read More »
Recordati Rare Disease Foundation is hosting a course on liver & liver-kidney transplantation for inherited metabolic disorders in London form 12 to 14 June 2025. Liver transplantation, either alone or combined with kidney transplantation, has become an established therapy options for some inherited metabolic diseases. There are now more reports with long-term follow-ups for several
We are excited to announce the launch of the “Brain Metabolism Dialogues“, a new series of webinars aimed at bridging the gap between clinical neurology and basic scientific research in brain metabolism. This initiative is a collaboration between MetabERN and the Society for the Study of Inborn Errors of Metabolism (SSIEM). These sessions will focus
Brain Metabolism Dialogues – webinar series Read More »
On February 11, the Parliament Hall of Udine Castle hosted an event for Rare Diseases Day, organized by UNIAMO Federazione Italiana Malattie Rare in collaboration with the Udine University Hospital (Azienda Sanitaria Friuli Centrale-ASU FC) and MetabERN. This initiative was part of the #UNIAMOleforze campaign, featuring over 60 events throughout February to raise awareness of
#UNIAMOleforze campaign: a Rare Diseases Day Event Held in Udine Castle Read More »
The ERICA ERN Research Conference (11th to 13th December 2024) concluded in Udine a few days ago. Over three days, more than 178 participants from all the 24 European Reference Networks, along with representatives from the European Commission, pharmaceutical companies, and regulatory agencies, gathered to discuss topics which will be crucial for the future of
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
Highlights from Our Impactful Month of Collaborations and Meetings Read More »
Healthcare professionals are invited to register for the 2025 ERNDIM External Quality Assurance schemes to ensure high standards in metabolic diagnostics.
Join the 2025 ERNDIM-EQA Schemes: Registration Now Open 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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