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European Reference Network - MetabERN

@ernmetabern.bsky.social

The European Reference Network for Rare Hereditary Metabolic Disorders (MetabERN). A better future for Rare Inherited Metabolic Disease patients. Visit us 🔗 metab.ern-net.eu

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Reposted by European Reference Network - MetabERN

ERN-RND @ern-rnd.bsky.social · 05/03/2025

#survey: Public consultation on Rare Diseases by the Public Health Committee of the #EuropeanParliament - directly related to the work of #ERNs, so take some time and fill it in! t1p.de/3ieqb @erneurogen.bsky.social @erknet.bsky.social @vascern.bsky.social @ernmetabern.bsky.social

europarl.europa.eu

SANT launches public consultation on rare diseases | News | European Parliament

On 28 February, marking the 2025 Rare Disease Day, Parliament’s public health committee kicks off its survey on rare diseases.

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Reposted by European Reference Network - MetabERN

VASCERN | European Reference Network @vascern.bsky.social · 24/02/2025

🚨 When the right doctor is in another country, how do rare disease patients get care? European Reference Networks (ERNs) are virtual networks connecting experts across the EU, ensuring patients get the right treatment no matter where they live. Learn more ➡️ bit.ly/3D5yYE0 #RareDiseaseDay

Illustration of a healthcare professional in a white coat using a stethoscope to check a patient’s blood pressure. The patient, wearing a pink shirt, extends their arm for the procedure. The background contains abstract medical cross symbols. The text reads: 'RARE PATIENTS. RARE EXPERTS. REAL OUTCOMES.' Below, additional text states: 'Rare Disease Day 2025, February 28.' Logos for the European Reference Networks and the European Union are present, indicating funding and support.

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European Reference Network - MetabERN @ernmetabern.bsky.social · 28/02/2025

🌍 Today is #RareDiseaseDay 2025! We stand with the 300 million people worldwide living with rare diseases. By coming together, we can raise awareness, drive change, and work toward a more inclusive and equitable future! 🔗 Read more: metab.ern-net.eu/rare-disease... #RareDiseaseDay2025

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Reposted by European Reference Network - MetabERN

Journal of Inherited Metabolic Disease @jimd-editors.bsky.social · 23/02/2025

Fancy a chat? Get ready for this terrific set of “Dialogues on Neurometabolim”, chaired by the fabulous A. Garcia-Cazorla and supported by MetabERN. 1st webinar: 10th March 2025 at 17.00 CET. Register here: us06web.zoom.us/webinar/regi... or using the QR code on the image below.

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