The European Reference Network for Hereditary Metabolic Diseases. A better future for Rare Inherited Metabolic Disease patients. RT ≠ Endorsement. #Together
Udine, Friuli-Venezia Giulia
Joined November 2017
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🌍 Today is #RareDiseaseDay 2025!
We stand with the 300 million people worldwide living with rare diseases.
Together, we can raise awareness, drive change, and work toward a more inclusive and equitable future for all!
🔗 Read more: buff.ly/4kiuB9q
#RareDiseaseDay2025
🎯 Advance your practice with the ESHG Precision Medicine Hybrid Workshop 2025!
📅 9th–11th April 2025
📍 The Pillar Centre, Mater Hospital, Dublin | Hybrid Event
🎓 Scholarships available! Apply by Jan 26th: buff.ly/3PNzWHy
#Genomics #HealthcareInnovation #ESHG2025
MetabERN retweeted
📣 Join ERDERA’s Extended Webinar on the JTC 2025!
Given the success of our previous session, we're hosting another webinar on the upcoming call. 🔎
🗓️ 14 Jan 2025 | ⏰ 14:00–16:00 CET | 🔗 Register here: loom.ly/-UdfZWU
#RareDiseases #ResearchFunding #ERDERA
MetabERN retweeted
The European reference network for metabolic diseases clinical pathway recommendations for #Pompe disease
@ojrarediseases @Metab_ERN @Aecom_EIM @GTEMinoritarias @AEEPompe @Glucogenosis @seneurologia @SENPE_
pmc.ncbi.nlm.nih.gov/article…
MetabERN retweeted
Thank you all for making the ERICA ERN Research Conference such a success! Grazie @Metab_ERN for hosting it in Udine and all the Poster presenters and speakers. Presentations soon available erica-rd.eu/event/erica-ga-e…
🎉 ERICA ERN Research Conference in Udine is off to a great start!
The first day of the meeting focused on showcasing the project's achievements and Work Packages and on its expected legacy for ERNs future!
More at: buff.ly/4gzk3jH
#ERNeu #EU4Health
MetabERN retweeted
@ERICA_RD_EU ERN Research Conference has started hosted by @Metab_ERN Maurizio Scarpa opening words by @AlbertoMPereir1 ERICA coordinator
The 4th @ERICA_RD_EU General Assembly & ERN Research Conference kicks off today!
🚀 We're thrilled to welcome representatives from #ERNeu and the #RareDiseases community in beautiful Udine.
ℹ️ erica-rd.eu/about/governance…
MetabERN retweeted
💡 Many thanks to all our speakers and participants for making the Conference "For an EU commitment to tackling #RareDiseases" a meaningful step forward!
📌Stay tuned for more updates!
👉europa.eu/!kn94kX
MetabERN retweeted
We are attending the conference organised by the @EU_EESC "For an EU commitment to tackle rare diseases".
JARDIN Joint Action joins commitment to support European policy framework for rare diseases.
We recall the work of #ERNs in this endeavour. #EU4Health #JARDIN #ERNs #EU
ALT "For an EU commitment to tackle rare diseases". Budapest.
Board Meeting, day 2: insightful sessions on new IT tools, Joint Actions, and collaborative projects. Finally, a wonderful performance by a Hungarian string quartet.
Special thanks to Istvan Balogh and György Pfliegler for this surprise and their support!
#MetabERN2024 #ERNeu
📍 Day 1 has ended, after leading to engaging discussions about current activities within the network. Today will be another day full of stimulating sessions, with a focus on Joint Actions and Collaborative projects.
#ERNeu #MetabERN2024 #RareDiseases
🚀 MetabERN annual Board meeting in Budapest just kicked off!
The meeting, with almost 100 attendees, aims to enhance collaboration and new insights to support patients with IMDs.
✨Let's discover what the next days have in store for us!
#MetabERN2024 #ERNeu #RareDiseases
MetabERN retweeted
@Together4RD & @ERICA_RD_EU Webinar about ERNs for Industry partners. The goal of this series is to showcase how industry can support the research ERNs and industry (can) perform together on rare diseases!
📆Mo2 Dec 🕔5-5:45 pm CET
Info and Registration: erica-rd.eu/event/together-f…
📢 The MetabERN Annual Board Meeting is almost here!
🗓️ November 27-29, 2024
📍 Budapest, Hungary
We look forward to engaging in discussions and sharing updates on our collaborative efforts in the field of rare metabolic diseases.
See you in Budapest!
📽️ youtube.com/watch?v=cNB0RUV8…
MetabERN retweeted
💬 Panel highlights from Dr. Andrea Bordugo (@Metab_ERN) & Dr. Alessandra Magnani (@_ERNRITA):
- ERNs’ strengths can be leveraged to improve newborn screening initiatives across the EU.
- Collaboration is key for reaching every child with effective screening programs.
Moderated by @LeireSolis (@IPOPI_info), this discussion sheds light on ERNs' critical role in advancing #NewbornScreening.
#Screen4Rare
MetabERN retweeted
🚨Exciting news! @ERDERA_org is pre-announcing its 2025 Joint Transnational Call for Proposals! 🚨🌍
🔗 Read more here: loom.ly/-YEsh3Y
#RareDiseases #Research #JTC2025 #ERDERA
The deadline for abstract submissions for the upcoming @ERICA_RD_EU ERN Research Conference has been extended to October 15, 2024!
Hurry and submit your abstract showcasing your ERN research!
ℹ️ More info: erica-rd.eu/event/erica-ga-e…
#RareDiseases #ERNresearch #ERNeu
MetabERN retweeted
🗓️Attention! Call for Abstracts related to ‘ERN Research’ deadline is extended until 15th October!
See the call text and Regulations For Abstracts:
erica-rd.eu/event/erica-ga-e…
MetabERN retweeted
🗓️🇪🇪Save the date! October 3rd: Meeting on the integration of European Reference Networks into the Estonian healthcare system
📌Organised by the Competence Centre of Rare Diseases at Tartu University Hospital. Register to attend in person or online! bit.ly/3MW3Wjk👇📝
ALT October 3rd: Seminar on the integration of European Reference Networks into the Estonian healthcare system. Tartu Ülikooli Kliinikum will organize a seminar on the integration of European reference networks into the Estonian healthcare system. This seminar will take place within the framework of JARDIN Joint Action. The language will be English, and it is possible to attend in person or online. You can check out the programme here: https://www.kliinikum.ee/harvikhaigused/wp-content/uploads/2024/09/jardin-meeting-03.10.2024.pdf Register now to attend in person or online: https://forms.gle/4ESXu7uCsvBXaFrt7