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JARDIN Joint Action @jardinjointaction.bsky.social · 7h

📍 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 Joint Action @jardinjointaction.bsky.social · 2d

ℹ️ For more information visit: https://jardin-ern.eu/event/jardin-general-assembly-2025

📷 ©GoVilnius

#RareDiseases #EU4Health #HealthUnion #Vilnius

JARDIN General Assembly 2025 – Vilnius, 7–10 Oct

The JARDIN General Assembly 2025 in Vilnius or online from 7–10 October. A key opportunity for JARDIN participants to review the progress of the JARDIN Work Packages, address questions about the project, discuss plans for future activities, meet and network.

jardin-ern.eu

JARDIN Joint Action @jardinjointaction.bsky.social · 2d

👥🚀 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.

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Reposted by JARDIN Joint Action

ERN eUROGEN @erneurogen.bsky.social · 8d

🚨 TONIGHT! Join us for a cutting-edge webinar on Stage II Testicular Germ Cell Tumours

👨‍⚕️Dr Arnout Alberts shares the latest in personalised, multidisciplinary care
📅 Wed 1 Oct @ 17:00 CEST
🎓 EACCME-accredited
🔗 bit.ly/eUROGEN01Oct25

#EUfunded #EU4Health #RareDisease #ERNs #UroOnc #UroSoMe

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ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social · 20d

📢 𝐔𝐩𝐜𝐨𝐦𝐢𝐧𝐠 𝐄𝐑𝐊𝐍𝐞𝐭 𝐖𝐞𝐛𝐢𝐧𝐚𝐫!

Our Webinar September is coming to an end with our last session!
Topic: 𝐏𝐡𝐨𝐬𝐩𝐡𝐚𝐭𝐞 𝐃𝐢𝐬𝐨𝐫𝐝𝐞𝐫𝐬
Date: 30 September
Speaker: Carsten Wagner
Moderator: Jens König

👉 𝐑𝐞𝐠𝐢𝐬𝐭𝐞𝐫 𝐧𝐨𝐰: https://register.gotowebinar.com/register/2567953835042611545

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JARDIN Joint Action @jardinjointaction.bsky.social · 17d

👉 🇮🇪 ec.europa.eu/eusurvey/run...
👉 🇮🇹 ec.europa.eu/eusurvey/run...
👉 🇷🇴 ec.europa.eu/eusurvey/run...

#RareDiseases #ERNs #EU4Health #HealthUnion #JARDIN #EUSurvey

JARDIN Joint Action @jardinjointaction.bsky.social · 17d

❓🤔 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! 🔗👇

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ERN EuroBloodNet @erneurobloodnet.bsky.social · 20d

📢Are you involved in the care of patients with rare diseases? Your insights are crucial to improving continuity of care and shaping future strategies for rare disease patients across Europe!

👉 bit.ly/46JYtGW

#ERNeu #ERNs @ec.europa.eu @jardinjointaction.bsky.social @euonehealth.bsky.social

Europe-wide survey on transition and transfer procedures in rare diseases within the European Reference Networks (ERNs) | News | EuroBloodNet

The survey aims to understand how young patients with rare and complex conditions are transitioned from paediatric to adult care, and how care is transferred.

bit.ly

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ERN eUROGEN @erneurogen.bsky.social · 27d

Join us for a webinar on Multi-Disciplinary Management of Cystinuria, with Kay Thomas & Matthew Bultitude 🧬 Supported by @espu.bsky.social

📅 Wed 17 Sept @ 18:00 CEST
🎓 EACCME accredited
🔗 Register: bit.ly/eUROGEN17Sep25

#EUfunded #EU4Health #RareDisease #ERNs #UroSoMe #PedUro

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JARDIN Joint Action @jardinjointaction.bsky.social · 29d

📢 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...

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JARDIN Joint Action @jardinjointaction.bsky.social · Sep 5

💡 ▶️ 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

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ERN eUROGEN @erneurogen.bsky.social · Sep 3

📊 Join us for a live update on the ERN eUROGEN Registry with Lotte Boormans & Loes van der Zanden.
🗓 Tuesday 9 Sept @ 18:00 CEST
💬 Includes Q&A
🔗 bit.ly/eUROGEN09Sep25

#EUfunded #EU4Health #HealthUnion #RareDisease #ERNs #UroSoMe #Urology

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ERN eUROGEN @erneurogen.bsky.social · Aug 12

🎓 ERN eUROGEN Sept webinars:
📍09/09: Registry Update
📍10/09: Fluorescence in Paeds Surgery
📍17/09: Cystinuria MDT
Register here: eurogen-ern.eu/webinars/upc...

#EUfunded #HealthUnion #EU4Health #HealthierTogether #StrongerTogether #RareDisease #UroSoMe #Urology #PedUro #SoMe4PedSurg

Upcoming Webinars - ERN eUROGEN

Webinar Programme Upcoming Webinars Past Webinars Upcoming Webinars Our upcoming webinars are below (sign-up links are usually available 1-2 weeks prior). You can subscribe here to receive webinar…

eurogen-ern.eu

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Reposted by JARDIN Joint Action

ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social · Aug 18

We’re back from ERKNet’s summer break! ☀️
Join our free expert-led webinars on rare kidney diseases 🔍
From diagnosis to cutting-edge research 🔬 — open to all 👥
More info: https://www.erknet.org/education-training/next-webinars

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Reposted by JARDIN Joint Action

ERN eUROGEN @erneurogen.bsky.social · Jul 23

🚨 Don’t miss our next webinar! “State of the Art: Management of Anterior Urethral Strictures in 2025” with Malte Vetterlein & Tim Ludwig 🩺
📅 Wed 23 July, 18:00 CEST
🔗 Register: bit.ly/eUROGEN23Jul25

#EUfunded #EU4Health #RareDisease #Urology @ec.europa.eu @jardinjointaction.bsky.social @uroweb.org

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JARDIN Joint Action @jardinjointaction.bsky.social · Jul 17

🙋 🙋‍♂️ 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 [email protected]
ℹ️ Learn more: download2.eurordis.org/ern/Youth_Pa...

#ERN #RareDiseases #Youth #EU4Health #Europe

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ERN eUROGEN @erneurogen.bsky.social · Jul 14

🩺 Don’t miss our webinar on MIS for anorectal malformation (ARM)
👨‍⚕️ Prof. Atsuyuki Yamataka will explore fistula prevention in male imperforate anus & recto-urethral fistula
📅 16 July | 🕕 18:00 CEST
🔗 bit.ly/eUROGEN16Jul25
#EUfunded #RareDisease #PedUro #SoMe4PedSurg #EU4Health #ERNs

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JARDIN Joint Action @jardinjointaction.bsky.social · Jul 7

🗂️🌐 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

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Reposted by JARDIN Joint Action

ERN-RND @ern-rnd.bsky.social · Jun 30

#WorldBrainDay is coming up on July 22! We asked our network: "If you could change one thing in the health care system for Rare Neurological Diseases what would that be and why?"

This is what our patient representative Mary Kearney (Friedreich's #Ataxia) said.

#WorldBrainDay2025 #WorldBrainDay25

Improving the health care system for RND - Mary Kearney (Patient Representative)

YouTube video by ERN-RND

www.youtube.com

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JARDIN Joint Action @jardinjointaction.bsky.social · Jun 27

🟣 JARDIN’s Midterm Review brought WP leaders to Vienna this week to assess progress and plan ahead.

JARDIN continues working to support the better integration of #ERNs into national healthcare systems.

Find out more here: jardin-ern.eu/new/jardin-j...

#RareDiseases #ERNEU #EU4Health #HealthUnion

JARDIN’s Midterm Review Brings Together Work Package Leaders at a Fruitful Meeting in Vienna - JARDIN Joint Action

JARDIN’s Joint Action midterm review in Vienna brought together Work Package leaders to evaluate progress and advance of JARDIN project.

jardin-ern.eu

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JARDIN Joint Action @jardinjointaction.bsky.social · Jun 24

📱🚀 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...

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Reposted by JARDIN Joint Action

VASCERN | European Reference Network @vascern.bsky.social · Jun 23

Today is World HHT Day 🩸

HHT is a rare disease that affects 1 in 5,000 people. It can cause nosebleeds, internal bleeding, and serious health issues if left undiagnosed.

We’ve created simple, helpful tools to download and share: bit.ly/4liqauL

#WorldHHTDay #RareDisease #SeeBeyond

A graphic titled “Not Just a Nosebleed” highlights Hereditary Haemorrhagic Telangiectasia (HHT), a rare vascular disease that affects 1 in 5,000 people worldwide. The word “nosebleed” features a red blood droplet as the letter “O”. On the left, an icon shows 1 in 2 people living with HHT have AVMs in their lungs or liver. On the right, an icon shows 1 in 5 people living with HHT may have gastrointestinal bleeding. The graphic includes the logos of the European Reference Network, VASCERN, and the European Union, along with the date “HHT Awareness Day – June 23”.

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Reposted by JARDIN Joint Action

ERN eUROGEN @erneurogen.bsky.social · Jun 19

🚀 CPMS 2.0 is now MOBILE! Allowing clinicians to collaborate on rare disease cases from anywhere.

📲 Android: play.google.com/store/apps/d...
📲 iOS: apps.apple.com/gb/app/eu-cp...

#EUfunded #EU4Health #HealthUnion #RareDisease #ERNs @ec.europa.eu @jardinjointaction.bsky.social

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ERKNet - European Reference Network for Rare Kidney Diseases @erknet.bsky.social · Jun 12

Upcoming ERKNet Webinar! 📢

📝Topic: Anti-Factor H Auto-Antibodies
🗓️ Date: June 24, 2025
⏰ Time: 4:00–5:00 PM CET
👩‍⚕️ Speaker: Michal Malina

👉 Register now: register.gotowebinar.com/register/711...

🌞ERKNet webinars will take a summer break after this session. We wish everyone a wonderful summertime!

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JARDIN Joint Action @jardinjointaction.bsky.social · Jun 18

🩺🌐 How can the European Reference Networks (#ERNs) support patients?

Watch this video to learn about the 24 virtual networks in Europe and how you can benefit from expert care — without the need to travel abroad. 👇

🔗 jardin-ern.eu/european-ref...

#RareDiseases #EU4Health #Patients #HealthUnion

What are the European Reference Networks (ERNs)?

YouTube video by JARDIN Joint Action

www.youtube.com

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