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 »
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 »
An analysis of how physical principles influence metabolic processes in brain function, highlighting recent research findings.
1st SYMPOSIUM “Connection Between Physics and Metabolism in Brain Function” Read More »
Celebrating advancements in neonatal screening on International Neonatal Screening Day 2024, emphasizing early detection of metabolic disorders.
International Neonatal Screening Day (INSD) / 28 JUNE Read More »
MetabERN contributes to the ERICA General Assembly, collaborating with European Reference Networks to enhance rare disease research.
ERICA 4th General Assembly & ERN Research Conference Read More »
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