@jardinjointaction.bsky.social
To improve the accessibility of the ERNs for patients across Europe, the EU has funded a pioneering 3-year project involving all member states (MS) plus Norway and Ukraine, the Joint Action on Integration of ERNs into National Healthcare Systems (‘JARDIN’)
🇺🇦 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...
🤖 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
🌐 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
📅🧸 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