One-Day International CTX Workshop Series
A one-day workshop on cerebrotendinous xanthomatosis (CTX) hosted by the CTX Alliance in Kyoto, Japan on 1 September 2025.
One-Day International CTX Workshop Series Read More »
Networks
Rare Neurotransmitter Diseases (RND) Researchers Forum
A forum on rare neurotransmitter diseases in Zagreb on 16 May 2025, bringing together researchers, clinicians, patients and caregivers.
Rare Neurotransmitter Diseases (RND) Researchers Forum Read More »
International Drug Repurposing Conference – iDR25
A conference on drug repurposing featuring AI, clinical trial design and patient access, held in Amsterdam on 7–8 May 2025.
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‘Towards an EU action plan on rare diseases’ Conference
A high-level conference on EU rare diseases policy held in Warsaw on 10 April 2025 under the Polish Presidency of the EU Council.
‘Towards an EU action plan on rare diseases’ Conference Read More »
Building a Research and Innovation Ecosystem for Rare Diseases
A European Parliament hearing on building a research and innovation ecosystem for rare diseases, organised by Brains4Brain Foundation on 29 April 2025.
Building a Research and Innovation Ecosystem for Rare Diseases Read More »
European Parliament Consultation on Rare Diseases
A public consultation by the European Parliament’s SANT Committee to gather insights on rare disease challenges, open until 31 March 2025.
European Parliament Consultation on Rare Diseases Read More »
#UNIAMOleforze campaign: a Rare Diseases Day Event Held in Udine Castle
A Rare Disease Day event held at Udine Castle on 11 February 2025, organised by UNIAMO in collaboration with MetabERN.
#UNIAMOleforze campaign: a Rare Diseases Day Event Held in Udine Castle Read More »
ERICA ERN Research Conference hosted by MetabERN
The ERICA ERN Research Conference, hosted by MetabERN in Udine from 11 to 13 December 2024, gathered 178 participants from all 24 ERNs.
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MetabERN Board Meeting 2024: updates from Budapest
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 »
Highlights from Our Impactful Month of Collaborations and Meetings
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 for
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Join the 2025 ERNDIM-EQA Schemes: Registration Now Open
Healthcare professionals are invited to register for the 2025 ERNDIM External Quality Assurance schemes to ensure high standards in metabolic diagnostics.
Join the 2025 ERNDIM-EQA Schemes: Registration Now Open Read More »
DeCODe Project Kick-Off: supporting Paediatric and Orphan Device Development
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 »
