iiinova — where your digital self keeps evolving

JARDIN Joint Action @jardinjointaction.bsky.social · 17/09/2026

📚 Two new #JARDIN WP6 articles are out! 🔹 Rare disease care pathways & ERN integration across Europe (European Journal of Medical Genetics) 🔹 Crisis readiness for rare disease populations (The Lancet Regional Health – Europe) 📖 Read both here: jardin-ern.eu/new/new-wp6-... #RareDisease #EU4Health

jardin-ern.eu

New JARDIN WP6 Articles Published in EJMG and the Lancet

Discover the latest JARDIN publications in the European Journal of Medical Genetics special issue from WP6.

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JARDIN Joint Action @jardinjointaction.bsky.social · 26/06/2026

📢 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

jardin-ern.eu

Czech Government approves National Strategy for Rare Diseases

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

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Reposted by JARDIN Joint Action

VASCERN | European Reference Network @vascern.bsky.social · 18/06/2026

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/...

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Reposted by JARDIN Joint Action

ERN-RND @ern-rnd.bsky.social · 10/06/2026

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.eu

ERN-RND Newsletter - June 2026

European Reference Network for Rare Neurological Diseases Newsletter

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Reposted by JARDIN Joint Action

ERN eUROGEN @erneurogen.bsky.social · 13/05/2026

📢 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

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JARDIN Joint Action @jardinjointaction.bsky.social · 12/05/2026

📬📰 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: mailchi.mp/jardin-ern/jardin-newsle…

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JARDIN Joint Action @jardinjointaction.bsky.social · 29/04/2026

🦓✨ 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: jardin-ern.eu/jardin-ern-expert-pan…

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JARDIN Joint Action @jardinjointaction.bsky.social · 28/04/2026

📢 @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: jardin-ern.eu/new/ern-affiliated-pa…

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JARDIN Joint Action @jardinjointaction.bsky.social · 28/04/2026

🧩 On 29–30 April, #UndiagnosedDay will be marked with an international event on improving diagnosis for children & adults living with undiagnosed conditions. 🔗 jardin-ern.eu/event/undiagnosed-day…

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JARDIN Joint Action @jardinjointaction.bsky.social · 24/04/2026

📊 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

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Reposted by JARDIN Joint Action

ERN-RND @ern-rnd.bsky.social · 09/04/2026

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: t1p.de/wsatw Programme: t1p.de/xp523

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JARDIN Joint Action @jardinjointaction.bsky.social · 27/03/2026

📧✨ 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 👉 jardin-ern.eu/newsletter

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Reposted by JARDIN Joint Action

ERN eUROGEN @erneurogen.bsky.social · 12/03/2026

🇺🇦 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

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Reposted by JARDIN Joint Action

ERN EuroBloodNet @erneurobloodnet.bsky.social · 12/03/2026

📢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

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JARDIN Joint Action @jardinjointaction.bsky.social · 04/03/2026

✍ 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...

jardin-ern.eu

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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Reposted by JARDIN Joint Action

ERN eUROGEN @erneurogen.bsky.social · 04/03/2026

🤖 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

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JARDIN Joint Action @jardinjointaction.bsky.social · 03/03/2026

🦓✨ 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 📚 jardin-ern.eu/european-reference-ne…

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JARDIN Joint Action @jardinjointaction.bsky.social · 28/02/2026

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: jardin-ern.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · 25/02/2026

💜🌍 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! jardin-ern.eu/rare-disease-day

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JARDIN Joint Action @jardinjointaction.bsky.social · 09/02/2026

⛵🌊 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: jardin-ern.eu/event/omplementary-th…

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JARDIN Joint Action @jardinjointaction.bsky.social · 30/01/2026

🌐 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...

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JARDIN Joint Action @jardinjointaction.bsky.social · 27/01/2026

📣 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

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Reposted by JARDIN Joint Action

ERN-RND @ern-rnd.bsky.social · 12/01/2026

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

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Reposted by JARDIN Joint Action

VASCERN | European Reference Network @vascern.bsky.social · 12/01/2026

📣 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...

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JARDIN Joint Action @jardinjointaction.bsky.social · 01/01/2026

🎉 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! ✨

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JARDIN Joint Action @jardinjointaction.bsky.social · 25/12/2025

📅🎄 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

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JARDIN Joint Action @jardinjointaction.bsky.social · 24/12/2025

📅🌟 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

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JARDIN Joint Action @jardinjointaction.bsky.social · 23/12/2025

📅🎆 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. 🔗 metab.ern-net.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · 22/12/2025

📅🍭 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

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JARDIN Joint Action @jardinjointaction.bsky.social · 21/12/2025

📅☃️ 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

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JARDIN Joint Action @jardinjointaction.bsky.social · 20/12/2025

📅🧸 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

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JARDIN Joint Action @jardinjointaction.bsky.social · 19/12/2025

📅❄️ 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

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JARDIN Joint Action @jardinjointaction.bsky.social · 18/12/2025

📅🔔 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

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JARDIN Joint Action @jardinjointaction.bsky.social · 17/12/2025

📅🛷 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. 🔗 reconnet.ern-net.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · 16/12/2025

📅🦓 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

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JARDIN Joint Action @jardinjointaction.bsky.social · 15/12/2025

📅🕯️ 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. 🔗 paedcan.ern-net.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · 14/12/2025

📅🌷 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. 🔗 ern-lung.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · 13/12/2025

📅🎠 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. 🔗 ern-ithaca.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · 12/12/2025

📅💗 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

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JARDIN Joint Action @jardinjointaction.bsky.social · 11/12/2025

📅⛸️ 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. 🔗 www.genturis.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · 10/12/2025

📅🎀 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. 🔗 ern-euro-nmd.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · 09/12/2025

📅🦉 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. 🔗 www.ern-eye.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · 08/12/2025

📅🐧 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. 🔗 eurogen-ern.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · 07/12/2025

📅❄️ 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

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JARDIN Joint Action @jardinjointaction.bsky.social · 06/12/2025

📅🌟 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. 🔗 www.euracan.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · 05/12/2025

📅☃️ 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. 🔗 epi-care.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · 04/12/2025

📅🧣 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. 🔗 www.ern-cranio.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · 03/12/2025

📅🦌 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. 🔗 ernbond.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · 02/12/2025

📅🎁 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. 🔗 www.erknet.org

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