As we wrap up Fabry Disease Awareness Month, the Antwerp University Hospital UZA, in collaboration with MetabERN, is excited to offer two free video lectures focused on recognizing Fabry disease in cardiology. These sessions are designed to empower cardiologists, general practitioners, internists, and specialists in metabolic diseases with the latest insights and knowledge from leading […]
Recognising Fabry Disease in Cardiology Read More »
Join the Rare Neurotransmitter Diseases (RND) Researchers Forum which will take place on May 16, 2025, in Zagreb, Croatia, under the theme: “Connecting the Network: From Basic Research and Clinical Phenotypes to Patient Voice.” The aim of this event is to contribute to knowledge exchange on research advancements, diagnostic tools, and treatment modalities and provide
Rare Neurotransmitter Diseases (RND) Researchers Forum Read More »
Join the iDR25 – Medicines Reimagined conference, organised by REMEDi4ALL, and Beacon, which will be held on 7 – 8 May 2025 in Amsterdam, The Netherlands. This exciting event will focus on unlocking the potential of existing drugs for patient benefit. It offers a unique opportunity to engage with global experts, key opinion leaders, and professionals who are at the forefront of drug repurposing
International Drug Repurposing Conference – iDR25 Read More »
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
‘Towards an EU action plan on rare diseases’ Conference Read More »
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 »
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