MetabERN

🌍 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

📣 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

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/articles/PMC11…

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…

🎉 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

⁦@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/governan…

💡 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

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

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

@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…

📢 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=cNB0RU…

💬 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

🚨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… #RareDiseases #ERNresearch #ERNeu

🗓️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…

🗓️🇪🇪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👇📝