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
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 »
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 »
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 »
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 »
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