POSTPONED 💻 Upcoming #webinar on “Social and Lifestyle Issues Related to Ataxias and HSP” 📅 13th January, NEW DATE: tba 🗣️ Lotte van de Venis, Radboud University Medical Center, Nijmegen and Lori Renna Linton, Euro-HSP Sign up 👉https://t1p.de/5nef2 Joint with the @euronmd.bsky.social and @ean.org

📣 Upcoming free virtual event | Spanish-language The Marfan Foundation will host its 5th Spanish-Language Summit 📅 Saturday, 24 January 2026 ⏰ 16:00–18:30 (CET) 💻 Online 🌍 Sessions are 100% in Spanish with experts from Europe, Latin America & the US. Register here: vascern.eu/events/marfa...

🎉 Happy New Year from #JARDIN! Two years of Europe-wide collaboration, working towards improvements for people with #RareDiseases or complex conditions. In 2026, we’ll keep strengthening cooperation to benefit patients and health systems. Wishing you a peaceful, healthy, and hopeful year ahead! ✨

📅🎄 Day 25 of #JARDIN's Advent Calendar And that’s a wrap! Over the past weeks, we’ve spotlighted the 24 ERNs that connect medical expertise across Europe with people living with rare diseases and complex conditions, to make the patient journey more accessible and supportive. 🔗https://jardin-ern.eu

📅🌟 Day 24 of #JARDIN's Advent Calendar ✨VASCERN is the ERN for rare multisystemic vascular diseases. It brings together expert teams from 19 European countries and works with 33 patient advocates to improve diagnosis, promote care, support patients and clinicians across Europe. 🔗https://vascern.eu

📅🎆 Day 23 of #JARDIN's Advent Calendar ✨ MetabERN supports people affected by rare inherited metabolic diseases (IMDs). Driven by collaboration between patients and experts, it works to capture innovative advances and translate them into care tailored to patients’ needs. 🔗 https://metab.ern-net.eu

📅🍭 Day 22 of #JARDIN's Advent Calendar ✨ERN-RND supports people living with rare neurological diseases. It connects 64 centres and partners in 24 countries, and addresses the needs of over 500,000 patients in EU by improving diagnosis, care and coordination across all ages. 🔗https://www.ern-rnd.eu

📅☃️ Day 21 of #JARDIN's Advent Calendar ✨ERNICA is the ERN for rare Inherited and Congenital (digestive and gastrointestinal) Anomalies. It brings together expertise to support patients with these conditions and improve outcomes beyond what a single country can achieve. 🔗https://www.ern-ernica.eu

📅🧸 Day 20 of #JARDIN's Advent Calendar ✨TransplantChild is the ERN on paediatric transplantation, covering all solid organ and stem cell transplants. It focuses on immunosuppression, vaccines, infections, & transition, improving long-term care for patients and families. 🔗https://transplantchild.eu

📅❄️ Day 19 of #JARDIN's Advent Calendar ✨ERN Skin is the ERN for rare, complex and undiagnosed skin disorders in children and adults. It provides highly specialised care and supports daily management while enabling patients to remain in their home environment whenever possible. 🔗https://ern-skin.eu

📅🔔 Day 18 of #JARDIN's Advent Calendar ✨RITA is the ERN for rare immunological disorders. It brings together experts to improve diagnosis, provide guidelines, and ensure access to therapies like biologics, immunoglobulin replacement, stem cell & gene therapy for all patients. 🔗https://ern-rita.org

📅🛷 Day 17 of #JARDIN's Advent Calendar ✨ ERN ReCONNET is the ERN for Connective Tissue and Musculoskeletal Diseases. It involves a total of 65 Healthcare Providers: 54 Full Members (FMs) and 9 Affiliated Partners (APs) from over 23 EU countries. 🔗 https://reconnet.ern-net.eu

📅🦓 Day 16 of #JARDIN's Advent Calendar ✨ ERN RARE-LIVER is the ERN for hepatological diseases, uniting expert centres to improve care for adults and children. It focuses on autoimmune, vascular, biliary and structural liver diseases and develops clinical practice guidelines. 🔗https://rare-liver.eu

📅🕯️ Day 15 of #JARDIN's Advent Calendar ✨ ERN PaedCan is the ERN on Paediatric Cancer working to reduce inequalities in childhood cancer survival by providing high-quality, accessible cross-border healthcare for children and adolescents across Europe. 🔗 https://paedcan.ern-net.eu

📅🌷 Day 14 of #JARDIN's Advent Calendar ✨ ERN-LUNG is the ERN for rare respiratory diseases. It brings together expert centres and patient organisations across Europe to reduce mortality, improve care, support research, and strengthen education and knowledge-sharing. 🔗 https://ern-lung.eu

📅🎠 Day 13 of #JARDIN's Advent Calendar ✨ ITHACA is the ERN for rare malformative conditions, intellectual disabilities and neurodevelopmental disorders. With 70 centres and 47 EPAGs, it shares expertise to improve care, advance research, and enhance access to information. 🔗 https://ern-ithaca.eu

📅💗 Day 12 of #JARDIN's Advent Calendar ✨ ERN GUARD-Heart is the ERN for rare heart diseases, with a focus on genetically transmitted and specialised paediatric procedures. It brings together 43 expert centres in 16 MS to improve diagnosis, treatment and patient care. 🔗https://guardheart.ern-net.eu

📅⛸️ Day 11 of #JARDIN's Advent Calendar ✨ ERN GENTURIS is the ERN for rare and/or complex genetic tumour risk syndromes (genturis). It works to improve identification, minimise variation in clinical outcomes, develop EU-guidelines, support research, and empower patients. 🔗 https://www.genturis.eu

📅🎀 Day #10 of #JARDIN's Advent Calendar ✨ ERN EURO-NMD is the ERN for rare neuromuscular diseases (NMDs), uniting 82 of Europe’s leading NMD clinical and research centres in 25 Member States and working closely with highly active patient organisations. 🔗 https://ern-euro-nmd.eu

📅🦉 Day 9 of #JARDIN's Advent Calendar ✨ ERN-EYE is the ERN dedicated to rare eye diseases. It covers 24 EU countries, brings together 51 full members, 8 affiliated partners and 11 ePAGs to provide the best possible care and expertise for more than 900 rare eye conditions. 🔗 https://www.ern-eye.eu

📅🐧 Day 8 of #JARDIN's Advent Calendar ✨ @erneurogen.bsky.social is the ERN for rare uro-recto-genital diseases and complex conditions. It unites experts to improve diagnosis, treatment and outcomes, drive innovation, and ensure equitable access for patients across Europe. 🔗 https://eurogen-ern.eu

📅❄️ Day 7 of #JARDIN's Advent Calendar ✨@erneurobloodnet.bsky.social improves care for rare and complex hematological diseases across Europe. It covers 450+ rare hematological disorders, uniting 90 members across 18 Member States, 7 affiliated partners in 6 MS and 11 ePAGs. 🔗https://eurobloodnet.eu

📅🌟 Day 6 of #JARDIN's Advent Calendar ✨ EURACAN is the ERN for rare adult solid cancers, connecting patients to expert centres across Europe. With 102 centres and ePAGs, it works to improve diagnosis, treatment, knowledge sharing, and multidisciplinary collaboration. 🔗 https://www.euracan.eu

📅☃️ Day 5 of #JARDIN's Advent Calendar ✨ EpiCARE is the ERN for rare and complex epilepsies, bringing together highly specialised health centres (38 full members and 12 affiliated partners) in 24/27 EU countries and in Norway with expertise in rare and complex epilepsies. 🔗 https://epi-care.eu

📅🧣 Day 4 of #JARDIN's Advent Calendar ✨ ERN CRANIO is the ERN for rare craniofacial anomalies and ENT disorders. It brings together expertise across four groups: craniosynostosis and craniofacial anomalies, cleft lip and palate, orodental anomalies and ENT disorders. 🔗 https://www.ern-cranio.eu

📅🦌 Day 3 of #JARDIN's Advent Calendar ✨ ERN BOND gathers all rare diseases affecting cartilage, bone and dentine, mainly congenital, chronic or genetic. Its mission is to ensure multidisciplinary, holistic and patient-centred care for people living with rare bone diseases. 🔗 https://ernbond.eu

📅🎁 Day 2 of #JARDIN's Advent Calendar ✨ ERKNet is the ERN for Rare Kidney Diseases, a consortium of 72 expert pediatric and adult nephrology centres in 24 European countries providing healthcare to more than 70,000 patients with rare disorders of the kidneys. 🔗 https://www.erknet.org

🚀 Today we launch #JARDIN’s Advent Calendar, spotlighting one European Reference Network (ERN) each day throughout December. Join us in the run-up to the festive season and learn about the 24 existing #ERNs, the #RareDiseases and complex conditions each one covers, and how you can get involved.

💻 Upcoming #webinar on “Fluid Biomarkers in Frontotemporal Dementia” 📅 2nd December, 3:00 CET 🗣️ Domenico Plantone, AOU - University Hospital Siena, Italy Sign up 👉https://t1p.de/9hsbc Joint with the @euronmd.bsky.social and @ean.org

📢​Register now for the next edition of the ERN-EuroBloodNet Thursdays Webinar! The #ThursdaysWebinars series is an accredited European online educational program, certified by EBAH.​ 🎙️Speaker: Olivier Hermine 👉Don’t miss it, secure your spot today! eurobloodnet.eu/education/th...

🤔 🗺️ How can #ERNs integration help shorten the diagnostic odyssey for patients with #RareDiseases? 👩‍⚕️ They link specialists across Europe to review complex cases remotely, giving expert support to your doctor without you needing to travel. More ➡️ https://jardin-ern.eu/home/countries #EU4Health

📣📘 ERNs monitoring report is out! The @ec.europa.eu has published the first Monitoring report of the 24 European Reference Networks (ERNs), highlighting their growing impact on #RareDiseases across Europe. ➡️ Access the full report: https://jardin-ern.eu/new/first-ern-monitoring-report #EU4Health

🩺 🥼 How does integrating the #ERNs into National Healthcare Systems support healthcare professionals? By engaging with ERNs, they can: 💡 Access virtual consultations 🎓 Join continuous training 📊 Contribute to research, guidelines & registries 🤝 Enhance care coordination & collaboration

📅 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