📢 Czech Republic adopts National Strategy for Rare Diseases 2026–2035 Focused on early diagnosis, better coordination, specialised care, and data-driven solutions, the strategy was developed under the EU co-funded SYPOVO project. ➡️ Learn more: jardin-ern.eu/new/czech-go... #RareDiseases

Czech Government approves National Strategy for Rare Diseases

Czech Government approves the National Strategy for Rare Diseases 2026–2035

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Our HHT Working Group finds bevacizumab benefits the majority of people with severe HHT complications, in real-world data from five European countries. Published in the British Journal of Clinical Pharmacology. Read here: bpspubs.onlinelibrary.wiley.com/doi/10.1002/...

What's new in the field of Rare Neurological Diseases? Our monthly #newsletter keeps you up to date with all important news, free webinars, participation calls, funding opportunities and events. www.ern-rnd.eu/mailpoet-ema...

ERN-RND Newsletter - June 2026

European Reference Network for Rare Neurological Diseases Newsletter

ern-rnd.eu

📢 Join an ERN eUROGEN webinar on Female Urethral Strictures with Dr Beatriz Martinez Gonzalez & Dr Adela Navarro Martínez. 🗓️ 20 May 2026 ⏰ 18:00–19:00 CEST 🔗 Register: tinyurl.com/eurogen20May26 #EUfunded #EU4Health #RareDisease #ERNs #FPMRS #Urology @ec.europa.eu @jardinjointaction.bsky.social

📬📰 JARDIN’s 4th newsletter is out now with 👇 💼 Updates from WPs 🌍 Highlights from Member States 🌐 ERNs' news, events, resources & training opportunities 👥 Resources for healthcare professionals & people living with #RareDiseases 📖 Read: https://mailchi.mp/jardin-ern/jardin-newsletter-4-april-2026

🦓✨ For #UndiagnosedDay, we highlight JARDIN’s virtual ERN expert panel supporting multidisciplinary discussions on complex, undiagnosed cases. 👥 Experts across #ERNs collaborate to review cases using CPMS 2.0. 🔎 Learn more: https://jardin-ern.eu/jardin-ern-expert-panel-undiagnosed-patients

📢 @ec.europa.eu launches 2026 call for ERN Affiliated Partners. Deadline: 1 Sept 2026. Strengthening access to specialised care for rare, low-prevalence & complex diseases through cross-border collaboration. 🔎 More info and how to apply: https://jardin-ern.eu/new/ern-affiliated-partners-call-2026

🧩 On 29–30 April, #UndiagnosedDay will be marked with an international event on improving diagnosis for children & adults living with undiagnosed conditions. 🔗 https://jardin-ern.eu/event/undiagnosed-day-2026-where-diagnosis-becomes-hope-the-power-of-collaboration-and-technology-in-rare-diseases

📊 WP5 Workshop: DCE Survey – Live Demo & Walkthrough 🗓 28 April 2026 | 🕓 16:00 CET | 💻 Online JARDIN members and collaborators are invited to join this online session exploring the DCE survey. 🔗https://jardin-ern.eu/event/wp5-workshop-wp5-discrete-choice-experiment-dce-survey-live-demo-walkthrough

Join us to explore the role of Bioinformatic Tools for Diagnosing Rare Diseases with Christian Gilissen at our #SpringSchool on "Next Generation Sequencing Diagnostics for Rare Neurological Diseases" on May 5th at 10:30 CEST. Register for free: https://t1p.de/wsatw Programme: https://t1p.de/xp523

📧✨ The fourth edition of the JARDIN newsletter is coming soon! Subscrite today and be among the first to discover: 🌍 Updates from work packages 💼 Highlights from Member States 📅 ERN news 👥 Stories and developments impacting people living with #RareDiseases 👉 https://jardin-ern.eu/newsletter

🇺🇦 Paediatric Urology Webinar Series for Ukraine: Bladder Exstrophy 🗓 19 March ⏰ 18:00 CET / 19:00 EET 🎙 Prof. Alaa El-Ghoneimi, Prof. Marc-David Leclair, Assoc. Prof. Gundela Holmndahl 🔗 events.zoom.us/ev/AlnMBiNyx... #EUfunded #EU4Health #HealthUnion #RareDisease #ERNs #PedUro #SoMe4PedSurg

📢​Not registered yet? Don’t miss today’s session of our Thursday Webinar Series! Join us for a session on von Willebrand factor and von Willebrand disease in ageing: mechanisms, evolving phenotypes and clinical implications. 👉​Register now! eurobloodnet.eu/education/th... #ERNs #ERNeu #VWD

✍ On #RareDiseaseDay, the European Health and Digital Executive Agency spoke with representatives of #JARDIN. 🗣️ They explained how the JA is strengthening the work of the #ERNs by supporting their better integration into healthcare systems in Europe. Read it here 🔗👇 jardin-ern.eu/new/jardin-j...

How the JARDIN Joint Action Strengthens ERNs for Rare Diseases

Learn how the JARDIN Joint Action supports the integration of European Reference Networks (ERNs) into healthcare systems, improving rare disease diagnosis, patient pathways, and cross-border collabora...

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🤖 Is robotic surgery shaping the future of functional & reconstructive urology? 🗓 11 Mar | 18:00 CET 🎙 Dr Tim Brits & Dr Donald Vaganée 🔗 events.zoom.us/ev/Am-FtKOsm... #EUfunded #EU4Health #HealthUnion #RareDisease #ERNs #Urology #UroSoMe @jardinjointaction.bsky.social @uroweb.org

🦓✨ Over the past weeks, we have shared the stories of people living with a rare disease. 💜 Thank you to everyone who so generously shared their personal stories for #RareDiseaseDay. 🌐 Explore them and share them with your networks 📚 https://jardin-ern.eu/european-reference-networks/patient-stories

Today is #RareDiseaseDay 💜 🦓🌟 We stand with all people affected by rare diseases and complex conditions across Europe and beyond. At #JARDIN, we work to make care pathways clearer and more accessible by promoting and supporting the work of the ERNs. 🔎 Learn more: https://jardin-ern.eu

💜🌍 To mark #RareDiseaseDay, # JARDIN partners and participating countries are hosting inspiring events accross Europe. 🦓💡 Discover what’s happening near you, participate and show your support for the rare disease community!  https://jardin-ern.eu/rare-disease-day

⛵🌊 Complementary therapies in the management of patients with rare skeletal diseases event to mark #RareDiseaseDay 2026 in Italy. 📅 13 Feb 2026 | 📍 Bologna 🔗 Programme and registration link here:  https://jardin-ern.eu/event/omplementary-therapies-rare-skeletal-diseases-rare-disease-day-2026

🎥 Watch our webinar on Adrenal Cancer and Malignant Cysts with Hans Langenhuijsen & Nikola Knežević 📺 youtu.be/NK8dsUHF_dU 📰 tinyurl.com/ERNeUROGENne... #EUfunded #EU4Health #RareDisease #ERNs #UroOnc #EUCancerPlan #EUCancerMission #UroSoMe @ec.europa.eu @jardinjointaction.bsky.social

ERN eUROGEN Webinar 139: Adrenal cancer and malignant cysts

This webinar was presented on the 28th of January by Prof. dr. Hans Langenhuijsen and Ass. Prof. Dr. Nikola Knežević. Prof. Langenhuijsen is a urologist, and professor in adrenal surgery at the…

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🌐 3rd Multidisciplinary Rare Diseases Conference | Spain Experts, clinicians & patient reps will discuss rare disease care, AI, gene therapy, case studies & patient-centred approaches to improve integrated care 📅 25 Feb 2026 🏥 H.U. La Paz Madrid 👥 In-person & Zoom 🖱️ jardin-ern.eu/event/3rd-mu...

📣 Transition in Rare Diseases Workshop 📅 27–28 February 2026 📍 Ghent, Belgium A two-day meeting dedicated to improving continuity of care from paediatric to adult services for people living with #RareDiseases. More info: jardin-ern.eu/event/transi... #RareDiseaseDay #EU4Health #ERNs

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