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 »
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 »
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 »
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 »
A comprehensive guide for PDH Deficiency patients covering symptoms, diagnosis, treatment and life transitions, available in multiple European languages.
Patient Journey on PDH Deficiency Read More »
The MetabERN patient community shares personal stories and experiences through video messages in support of the international Rare Disease Day 2024.
MetabERN supports Rare Disease Day 2024 Read More »
The annual scientific meeting in San Diego brings together global experts in lysosomal diseases to share advances in research and clinical developments.
20th Annual WORLDSymposium – February 4-9, 2024 Read More »
European Reference Networks coordinators and patient groups address EU leadership to ensure continued support for rare disease healthcare across Europe.
A collaborative conference on Smith-Lemli-Opitz syndrome in Gothenburg brings together families and medical professionals with both onsite and online access.
Swedish SLOS Conference – October 2, 2023 Read More »
From 6 to 7 July 2023, the MetabERN centre Sant Joan de Déu Hospital in Barcelona will host the Workshop: “Brain Metabolism Workshop: from rare diseases to common biological pathways”. This will be an excellent occasion for patients, clinicians, and researchers for sharing knowledge and new ideas on brain metabolism as a transversal approach for
Brain Metabolism Workshop – 6-7 July 2023 Read More »
Hey, want to upgrade to pro plan?
Upgrade Now
& get 25% off
Offer valid only for 24 hrs.
