📅 The #RareDiseaseDay 2026 countdown is on! 📺 Watch the official video below, explore the available materials, and join the global movement raising awareness for 300 million people living with a #RareDisease. 💜🌍 www.rarediseaseday.org 📩 Let us know your #JARDIN or national plans! jardin-ern.eu

🏥 Why integrate #ERNs into National Healthcare Systems? 👩‍⚕️ Because it helps ensure faster access to expertise and high-quality care for people with #RareDiseases across Europe. 🔗 Integration strengthens links, improves diagnosis and care pathways, and makes better use of resources. #EU4Health

🏢 Last week, #JARDIN WP7 colleagues from Latvia, Romania and Austria visited the Center for Rare Diseases in Würzburg for a twinning exercise. Hosted by Prof. Helge Hebestreit, the group learned about the centre’s work, including its Undiagnosed Disease Program, and exchanged insights. #EU4Health

📚💻 #JARDIN Online Workshop WP8 invites anyone interested to an online workshop on the European Health Data Space (EHDS) and its implications for data sharing in the context of rare diseases. 📊🏥 📅 17/11 🕘 9:00 – 12:00 CET 👉 Register here: jardin-ern.eu/event/wp8-ra... #RareDiseases #EU4Health

🧬 Around 6,000–8,000 rare diseases affect people across Europe. To strengthen care and collaboration, the EU created the European Reference Networks #ERNs, linking +1,600 expert centres in 27 countries to improve diagnosis, research, and treatment. Learn more ➡️ health.ec.europa.eu/document/dow...

The European Reference Networks (#ERNs) connect experts across Europe so people living with #RareDiseases can access the care they need. 24 ERNs help share knowledge, improve diagnosis & treatment, and strengthen healthcare systems. Learn more jardin-ern.eu/european-ref... #EU4Health #HealthUnion

📬📰 JARDIN’s 3rd newsletter is out now! Don't miss: 💼 Updates from JARDIN’s WPs 🌍 Highlights from MS 🌐 News, events, resources & training opportunities from the ERNs 👥 Insights for healthcare professionals and people living with #RareDiseases and complex conditions 📖 👉 mailchi.mp/b86f083afd4a...

📢 Upcoming JARDIN Webinar! WP5 invites #JARDIN members and collaborators to join the webinar ‘Introduction to Discrete Choice Experiment (DCE) as a tool of evaluation for #RareDiseases activities’. 📲 Click here for information on how to join the event: jardin-ern.eu/event/wp5-we... #HealthUnion

💻#webinar on “Guidelines on the Assessment and Treatment of Neurogenic Urinary and Sexual Symptoms” 📅25th November, 3 CET 🗣️A. Fanciulli and P. Guaraldi, Medical University Innsbruck and Azienda USL di Bologna Sign up 👉 https://t1p.de/9cxi7 Joint with the @euronmd.bsky.social and @ean.org

📩✨ Don’t miss out! — JARDIN’s 3rd newsletter is coming soon with: 💼 Updates from JARDIN’s WPs 🌍 Highlights from participating MS 🌐 ERNs' news, events & opportunities 👥 Insights for healthcare professionals and people living with #RareDiseases 👉 jardin-ern.eu/newsletter #EU4Health #HealthUnion

Curious about "Development and Implementation of ERN Care Pathways"? Join Birutė Tumienė at our Symposium "European Healthcare for RND Patients" Oct 28, 12:40 CET. Registration : https://f.mtr.cool/gaopxhezhj Program: https://f.mtr.cool/usfnrgxwhx @ernmetabern.bsky.social @euronmd.bsky.social

🚨 TONIGHT! Join us for a joint webinar on prenatal & anatomical studies in ARM 💡 📅 Wed 15 Oct @ 18:00 CEST 👶 Featuring speakers from NL & Japan 🎓 EACCME-accredited 🔗 bit.ly/eUROGEN15Oct25 #EUfunded #EU4Health #RareDisease #ERNs #PedUro #SoMe4PedSurg

🔔 Our European Reference Networks (#ERNs) survey closes today! Do you live in #Ireland, #Italy, or #Romania and are a person living with a rare disease or complex condition, member of a patient organisation, or a healthcare professional? Your voice matters. Share your experience today 🔗👇

🔚✨ And that’s a wrap! #JARDIN’s General Assembly has come to an end after four days of collaboration, fruitful exchange, and shared progress. 💙 A heartfelt thank you to all who joined in person and online — demonstrating the importance of broad participation and the power of collaboration. #ERN

👥💡 After four inspiring days of collaboration and exchange, we've reached the final day of our GA. Yesterday, WPs 6, 7, 8 & 9 shared their progress updates, while Satellite Meetings explored undiagnosed disease programmes and national governance models. Today’s sessions focus on data management.

📍 We’re halfway through #JARDIN’s General Assembly 2025! 💬 Participants have received detailed progress updates from Work Packages 1-5 and 9, and joined sessions on communication campaigns, national care pathways and #ERNs referral systems, and sustainability. #EU4Health #HealthUnion #Vilnius

👥🚀 JARDIN’s General Assembly starts today! Welcome to all joining us in Vilnius and online for four days of collaboration, learning, and exchange — 7–10 Oct 2025. A key meeting of our Joint Action to support integration of #ERNs into National Healthcare Systems, co-funded by the  @ec.europa.eu#ERNs

🚨 TONIGHT! Join us for a cutting-edge webinar on Stage II Testicular Germ Cell Tumours 👨‍⚕️Dr Arnout Alberts shares the latest in personalised, multidisciplinary care 📅 Wed 1 Oct @ 17:00 CEST 🎓 EACCME-accredited 🔗 bit.ly/eUROGEN01Oct25 #EUfunded #EU4Health #RareDisease #ERNs #UroOnc #UroSoMe

📢 𝐔𝐩𝐜𝐨𝐦𝐢𝐧𝐠 𝐄𝐑𝐊𝐍𝐞𝐭 𝐖𝐞𝐛𝐢𝐧𝐚𝐫! Our Webinar September is coming to an end with our last session! Topic: 𝐏𝐡𝐨𝐬𝐩𝐡𝐚𝐭𝐞 𝐃𝐢𝐬𝐨𝐫𝐝𝐞𝐫𝐬 Date: 30 September Speaker: Carsten Wagner Moderator: Jens König 👉 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐧𝐨𝐰: https://register.gotowebinar.com/register/2567953835042611545

❓🤔 How familiar are you with European Reference Networks (#ERNs)? If you live in #Ireland, #Italy, or #Romania and are a person living with a #RareDisease or complex condition, member of a patient organisation, or a healthcare professional, we want to hear from you! Complete our short suryvey! 🔗👇

📢Are you involved in the care of patients with rare diseases? Your insights are crucial to improving continuity of care and shaping future strategies for rare disease patients across Europe! 👉 bit.ly/46JYtGW #ERNeu #ERNs @ec.europa.eu @jardinjointaction.bsky.social @euonehealth.bsky.social

Join us for a webinar on Multi-Disciplinary Management of Cystinuria, with Kay Thomas & Matthew Bultitude 🧬 Supported by @espu.bsky.social 📅 Wed 17 Sept @ 18:00 CEST 🎓 EACCME accredited 🔗 Register: bit.ly/eUROGEN17Sep25 #EUfunded #EU4Health #RareDisease #ERNs #UroSoMe #PedUro

📢 Exciting news! The JARDIN General Assembly will take place in Vilnius, Lithuania on 7–10 Oct 2025. A key meeting of our Joint Action to support integration of European Reference Networks (ERNs) into national healthcare systems, co-funded by the @ec.europa.eu. Info 👉 jardin-ern.eu/event/jardin...

💡 ▶️ New video tutorial for patient representatives involved in the development of care pathways. Learn: ✅ What care pathways are ✅ JARDIN’s model ✅ The role of patient representatives at each stage of the process 🎥 Watch it here! ➡️ jardin-ern.eu/new/patient-... #RareDiseases #EU4Health #JARDIN

📊 Join us for a live update on the ERN eUROGEN Registry with Lotte Boormans & Loes van der Zanden. 🗓 Tuesday 9 Sept @ 18:00 CEST 💬 Includes Q&A 🔗 bit.ly/eUROGEN09Sep25 #EUfunded #EU4Health #HealthUnion #RareDisease #ERNs #UroSoMe #Urology

🎓 ERN eUROGEN Sept webinars: 📍09/09: Registry Update 📍10/09: Fluorescence in Paeds Surgery 📍17/09: Cystinuria MDT Register here: eurogen-ern.eu/webinars/upc... #EUfunded #HealthUnion #EU4Health #HealthierTogether #StrongerTogether #RareDisease #UroSoMe #Urology #PedUro #SoMe4PedSurg

We’re back from ERKNet’s summer break! ☀️ Join our free expert-led webinars on rare kidney diseases 🔍 From diagnosis to cutting-edge research 🔬 — open to all 👥 More info: https://www.erknet.org/education-training/next-webinars

🚨 Don’t miss our next webinar! “State of the Art: Management of Anterior Urethral Strictures in 2025” with Malte Vetterlein & Tim Ludwig 🩺 📅 Wed 23 July, 18:00 CEST 🔗 Register: bit.ly/eUROGEN23Jul25 #EUfunded #EU4Health #RareDisease #Urology @ec.europa.eu @jardinjointaction.bsky.social @uroweb.org

🙋 🙋‍♂️ Are you aged 18–25? 💭 Or do you know someone who is? 🤝 The ERN Youth Panel is looking for new members! Interested or know someone who might be? 📩 Get in touch at [email protected] ℹ️ Learn more: download2.eurordis.org/ern/Youth_Pa... #ERN #RareDiseases #Youth #EU4Health #Europe

🩺 Don’t miss our webinar on MIS for anorectal malformation (ARM) 👨‍⚕️ Prof. Atsuyuki Yamataka will explore fistula prevention in male imperforate anus & recto-urethral fistula 📅 16 July | 🕕 18:00 CEST 🔗 bit.ly/eUROGEN16Jul25 #EUfunded #RareDisease #PedUro #SoMe4PedSurg #EU4Health #ERNs

🗂️🌐 The European Reference Networks Service Directory helps patients and professionals find specialised expertise on rare and complex diseases across Europe. 🔍 Search info on the 24 #ERNs, their members by country, and diseases covered 👉 webgate.ec.europa.eu/ernsd/screen... #RareDiseases #EU4Health

#WorldBrainDay is coming up on July 22! We asked our network: "If you could change one thing in the health care system for Rare Neurological Diseases what would that be and why?" This is what our patient representative Mary Kearney (Friedreich's #Ataxia) said. #WorldBrainDay2025 #WorldBrainDay25

🟣 JARDIN’s Midterm Review brought WP leaders to Vienna this week to assess progress and plan ahead. JARDIN continues working to support the better integration of #ERNs into national healthcare systems. Find out more here: jardin-ern.eu/new/jardin-j... #RareDiseases #ERNEU #EU4Health #HealthUnion

📱🚀 CPMS 2.0 is now mobile! The Clinical Patient Management System, used by European Reference Networks (#ERNs) to collaborate on rare and complex cases, is now available on iOS and Android. 🔍 New desktop features too: advanced search, audit logs & more. 📲 More info: jardin-ern.eu/new/cpms-2-0...

Today is World HHT Day 🩸 HHT is a rare disease that affects 1 in 5,000 people. It can cause nosebleeds, internal bleeding, and serious health issues if left undiagnosed. We’ve created simple, helpful tools to download and share: bit.ly/4liqauL #WorldHHTDay #RareDisease #SeeBeyond

🚀 CPMS 2.0 is now MOBILE! Allowing clinicians to collaborate on rare disease cases from anywhere. 📲 Android: play.google.com/store/apps/d... 📲 iOS: apps.apple.com/gb/app/eu-cp... #EUfunded #EU4Health #HealthUnion #RareDisease #ERNs @ec.europa.eu @jardinjointaction.bsky.social

Upcoming ERKNet Webinar! 📢 📝Topic: Anti-Factor H Auto-Antibodies 🗓️ Date: June 24, 2025 ⏰ Time: 4:00–5:00 PM CET 👩‍⚕️ Speaker: Michal Malina 👉 Register now: register.gotowebinar.com/register/711... 🌞ERKNet webinars will take a summer break after this session. We wish everyone a wonderful summertime!

🩺🌐 How can the European Reference Networks (#ERNs) support patients? Watch this video to learn about the 24 virtual networks in Europe and how you can benefit from expert care — without the need to travel abroad. 👇 🔗 jardin-ern.eu/european-ref... #RareDiseases #EU4Health #Patients #HealthUnion

🩺 Join ERN eUROGEN and ERNICA for a webinar on Anal Lipofilling: When-Why-How, Outcomes & Ethical Considerations 📅 18 June | 🕕 18:00 CEST 🔗 bit.ly/eUROGEN18Jun25 With support from @eupsaofficial.bsky.social & ARM-Net #EUfunded #RareDisease #PedUro ‪@ec.europa.eu‬ @jardinjointaction.bsky.social‬

Make your voice heard! 🗣️ #ERDERA has launched a survey to explore how #RareDisease patients can contribute to EU-funded research. 🔐 Confidential & 🤝 Co-created with patients 🔗 Take the survey: shorturl.at/ePVuL (open until mid-July) 📄 Learn more: shorturl.at/c03db

❓ Have you heard of the #ERNs? 🔎 Discover the 24 European Reference Networks and how they support people living with rare diseases or complex conditions across Europe. 🌍 Visit the JARDIN website to explore them all! 👉 jardin-ern.eu/european-ref... #RareDiseases #PatientVoice #EU4Health

🚨 TONIGHT! Join a ERN eUROGEN webinar: 🖥 Update in the Deferred Management of Urethral Trauma 👤 Felix Campos-Juanatey 📅 Wednesday 4 June @ 18:00 CEST 🔗 bit.ly/eUROGEN4Jun25 #EUfunded #EU4Health #FPMRS ‪@ec.europa.eu‬ @jardinjointaction.bsky.social‬ @uroweb.org

🤔 Did you know that JARDIN's mission is to support the integration of European Reference Networks (ERNs) into national healthcare systems across Europe? 🤝 Involving all Member States, plus Norway & Ukraine, #JARDIN promotes collaboration, innovation, and a patient-centred approach. 🔗 jardin-ern.eu

🌐 Member States at #WHA78 have adopted a landmark resolution declaring #RareDiseases a global health priority. This marks a turning point for over 300 million people worldwide—advancing diagnosis, care, inclusion, and access to treatment. #Resolution4Rare www.enfermedades-raras.org/actualidad/n...

🩺🧬 Today is #UndiagnosedDay. Around 350 million people worldwide are living with an undiagnosed disease. At #JARDIN, we are working to support European Reference Networks in their goal to facilitate diagnostic pathways 📢This isn't just a day. It's a movement! #UndiagnosedDay2025 #ERNs

📧✨️ The 2nd edition of the JARDIN newsletter is coming soon! Read about: 🌍 News from JARDIN’s work packages 💼️ Highlights from participating Member States 📅 Events, resources and ERN-related news 👥 Stories from people living with #RareDiseases & complex conditions ✍️ jardin-ern.eu/newsletter

Cross-border healthcare within the #EU? The "European Reference Networks for Rare Diseases" (ERNs) make that possible! There are 24 ERNs, co-funded by the @ec.europa.eu. Meet @vascern.bsky.social - the experts on Rare Multisystemic #VascularDiseases

📢 One week until #RareDiseaseDay! On 28 February, we stand with the 300 million people living with a rare disease to raise awareness, promote policy change, and advance research. 🌍💙 🗓️ Stay tuned for more updates as we mark this important day! #RareDiseases