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 🔗 https://metab.ern-net.eu/
Visit us 🔗 https://metab.ern-net.eu/
Reposted by European Reference Network - MetabERN
#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
@erneurogen.bsky.social @erknet.bsky.social @vascern.bsky.social @ernmetabern.bsky.social
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.
www.europarl.europa.eu
March 5, 2025 at 9:13 AM
#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
@erneurogen.bsky.social @erknet.bsky.social @vascern.bsky.social @ernmetabern.bsky.social
Reposted by European Reference Network - MetabERN
🚨 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
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
February 24, 2025 at 11:34 AM
🚨 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
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
🌍 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
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
February 28, 2025 at 7:51 AM
🌍 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
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
Reposted by European Reference Network - MetabERN
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.
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.
February 23, 2025 at 6:24 PM
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.
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.