Sant Joan de Deu Hospital (Barcelona, Spain), one of the 69 MetabERN healthcare providers, has opened a clinical trial that recruits patients for an open-label study in male pediatric patients with cerebral X-LINKED ADRENOLEUKODYSTROPHY (cALD) to assess the effect of a new experimental treatment on the progression of cerebral lesions.
X-LINKED ADRENOLEUKODYSTROPHY | Clinical Trial Read More »
The NCL Foundation offers €50,000 for research on CLN3 disease. Junior scientists and clinicians can apply by 30 Nov 2019.
NCL Research Award 2019 Read More »
The International Course Training on strategies to foster solutions of undiagnosed rare disease cases is part of a series of training activities.
Malta has designated the Mater Dei Hospital (MDH) as a National Coordination Hub for ERNs and MetabERN has been nominated by six associated national centres.
MetabERN Affiliated Partners (AP) Read More »
The Portuguese Association for CDG (APCDG) has developed 2 short surveys to assess the needs and solutions for future therapies among CDG Families and Professionals.
Surveys developed by the Portuguese Association for CDG Read More »
A study identifies 23 CDG types with immune involvement, highlighting infection risks and potential therapeutic targets.
CDG and immune response: From bedside to bench and back Read More »
A comprehensive webinar from CEMA UZA Belgium explores protocols and challenges in transitional care for metabolic disease patients.
Second Webinar on the Transition in IMDs – Presentation Read More »
MetabERN was granted the second call for INEA/CEF for a total of 210.000 euros. The project proposed to the evaluators will focus on three main activities: the CPMS, e-Learning and telemedicine.
MetabERN has been granted the second call for INEA/CEF Read More »
The European Joint Programme on Rare Diseases brings over 130 institutions from 35 countries to create a comprehensive, sustainable ecosystem allowing a virtuous circle between research, care and medical innovation.
European Joint Programme on Rare Diseases (EJP RD) Read More »
Comprehensive coverage of ERN Coordinators meeting and Board of Member States discussions on network expansion and system integration.
ERN Coordinators and Board of Members States News Read More »
A comprehensive questionnaire gathering patient perspectives on clinical trials across the European rare metabolic disease network.
MetabERN Survey – Patients’ Perspective of Clinical Trials Read More »
Today, the first EU patients can use ePrescriptions issued by their home doctor when visiting a pharmacy in another EU country.
First EU citizens using ePrescriptions in other EU country Read More »
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