Emergencies in Neurometabolic Disorders and possible differential diagnosis

Education, Education for Professionals, Events

An exciting two-day hybrid course hosted by Sant Joan de Déu Hospital in Barcelona will take place on July 3rd and 4th, 2025. This course consists of eight immersive modules covering key aspects of neurometabolic emergencies and their differential diagnoses. Participants will delve into crucial topics such as acute metabolic decompensations, neuroimaging patterns, emergency interventions, […]

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22nd Postgraduate Course on Lysosomal Storage Disorders

Education, Education for Professionals, Events

The 22nd Postgraduate Course on Lysosomal Storage Disorders is set to take place from June 11 to 14, 2025 in Nierstein, Germany. This course organised by the Department of Paediatric and Adolescent Medicine at the University Medical Center Mainz is renowned for its dedication to enhancing the understanding of lysosomal storage disorders (LSDs) among professionals

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‘Towards an EU action plan on rare diseases’ Conference

Events, Networks, News

The conference entitled Towards an EU Action Plan on Rare Diseases will take place on 10 April 2025 at 9 a.m. at the Medical University in Warsaw, Poland, hosted by the European Economic and Social Committee (EESC), the Polish Ministry of Health, and the Medical University of Warsaw. The conference will take place under the auspices of

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Tyrosinemia Type 1 – webinar hosted by the AOA Subnetwork

Education, Education for Professionals, Events, News

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

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Building a Research and Innovation Ecosystem for Rare Diseases

News, Events, Networks, Other, Press Releases

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

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Dialogues on Physic regulation of Neurometabolism v.2 edited

Dialogue Between Physics and Metabolism in Brain Functions

Education, Education for Professionals, Events, News

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

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Brain Metabolism Dialogues – webinar series

Education for Professionals, Education, Events, News

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

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Online Webinar “Think Ammonia”

Education for Patients, Education, Education for Professionals, Events

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

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#UNIAMOleforze campaign: a Rare Diseases Day Event Held in Udine Castle

News for Patients, Events, Networks, News, Past Event

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

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SanFilippo Webinar – Urgencies & Pain Management

Education for Patients, Education, Events, Past Event

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

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ERICA ERN Research Conference hosted by MetabERN

News, Events, Networks

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

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