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 »
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 »
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 »
Register for the Online Webinar “Think Ammonia” hosted by the Greek patient organisation Krikos Zois in collaboration with Metabolic Support UK and endorsed by MetabERN. Go to the registration page. Ammonia is a metabolite that is present in all living organisms. However, its potential danger as a silent predator is less well-known. We are pleased
Online Webinar “Think Ammonia” 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 SanFilippo Fighters Patient Organisation and the European Reference Network for Inherited Metabolic Diseases (MetabERN) invite you to the first session of an exciting webinar series exploring various aspects of SanFilippo Syndrome. This webinar offers a unique opportunity to learn from the following leading experts in the field: Dr. Serena GasperiniIRCCS San Gerardo dei Tintori
SanFilippo Webinar – Urgencies & Pain Management 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 »
Summary of key discussions and outcomes from the 2024 MetabERN Annual Board Meeting, focusing on advancements in rare metabolic disorder care.
MetabERN Annual Board Meeting 2024 Read More »
MetabERN organizes national workshops to educate patients and families about their rights and the challenges of rare diseases.
National Workshops on Patients’ Rights and Rare Diseases Read More »
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