JARDIN Joint Action
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JARDIN Joint Action
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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’)
🤔 🗺️ 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
November 27, 2025 at 2:10 PM
📣📘 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
November 26, 2025 at 11:20 AM
🩺 🥼 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
November 25, 2025 at 2:02 PM
🏥 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
November 20, 2025 at 8:37 AM
🏢 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
November 18, 2025 at 1:45 PM
📚💻 #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
November 14, 2025 at 1:32 PM
🧬 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...
November 13, 2025 at 8:35 AM
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
November 6, 2025 at 11:25 AM
📬📰 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...
November 5, 2025 at 11:23 AM
📢 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
October 30, 2025 at 2:07 PM
📩✨ 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
October 24, 2025 at 8:36 AM
🔔 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 🔗👇
October 13, 2025 at 11:05 AM
🔚✨ 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
October 10, 2025 at 12:17 PM
👥💡 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.
October 10, 2025 at 9:09 AM
📍 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
October 9, 2025 at 10:40 AM
👥🚀 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.
October 7, 2025 at 10:12 AM
❓🤔 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! 🔗👇
September 22, 2025 at 1:47 PM
📢 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...
September 10, 2025 at 8:03 AM
💡 ▶️ 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
September 5, 2025 at 8:59 AM
🙋 🙋‍♂️ 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 ern.youthpanel@uzgent.be
ℹ️ Learn more: download2.eurordis.org/ern/Youth_Pa...

#ERN #RareDiseases #Youth #EU4Health #Europe
July 17, 2025 at 9:29 AM
🗂️🌐 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
July 7, 2025 at 10:38 AM
📱🚀 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...
June 24, 2025 at 3:13 PM
❓ 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
June 10, 2025 at 11:15 AM
🤔 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
May 29, 2025 at 9:52 AM
🩺🧬 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
April 29, 2025 at 11:57 AM