Kirsten represents LUPUS EUROPE at ERN meeting in Vilnius

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A chance to meet up – Aiste, Aldevina and Ingrida from the Lithuanian Lupus group with Kirsten

For tweets and pictures from the event, visit LUPUS EUROPE’s twitter page.

From our recent newsflash:  On March 9th EU President of the European Commission, Jean-Claude Juncker, opened the third meeting and Kick-off of the European Reference Networks (ERNs) taking place in Vilnius, Lithuania.
Please see the short video presenting the concept of ERNs here .
European reference networks (ERNs) help professionals and centres of expertise in different countries to share knowledge. ERNs should:
– apply EU criteria to tackle rare diseases requiring specialised care
– serve as research and knowledge centres treating patients from other EU countries
– ensure the availability of treatment facilities where necessary
24 ERNs have been established, with LUPUS EUROPE the patient representative in the ReCONNet on rare and complex rheumatic diseases, along with, among others, Scleroderma and EURORDIS’ EPAG. For more information , please contact Kirsten.

For tweets and pictures from the event, visit LUPUS EUROPE’s twitter page.

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2 days ago

🏆 We’re thrilled to announce that #LupusGPT has won the PFMD #MadeWithPatients Award 2025 as Best Emerging Innovation!

🌍A huge moment for Lupus Europe & the European #lupus community — proving what’s possible through true patient innovation and collaboration.

😃Celebrating at #EULAR2025!

#PEOF2025
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1 week ago

🏆 This Wednesday, we will find out if LupusGPT will win the PFMD Made with Patients Award 2025!

🎉 Join us in this exciting moment for the lupus community by watching the ceremony live online (registration is available at the link provided in our blog post).

👉 If you still don’t know what this huge achievement means, read our latest blog post, where you will also find the link to register for the live ceremony at the Patient Engagement Open Forum (PEOF).

💜 Created by patients, for patients, #LupusGPT and #EASYLupus are already breaking barriers in access to reliable, multilingual lupus information. Check the tool out and explore how easy it is to access valid and clear lupus information in your language.

Remember! All the information and links are available in our latest blog post!

www.lupus-europe.org/lupusgpt-made-with-patients-awards-2025/
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2 weeks ago

🟣 LUPUS-ALERT is moving forward!

Thanks to the amazing collaboration between healthcare professionals and patients, we’ve now identified many potential vulnerabilities that can impact access to appropriate lupus care.

We want to extend a special thank you to all the lupus patients who responded to our call and shared the barriers patients may face: financial, social, linguistic, geographic…

🌟 Your contribution is helping to develop a tool that will systematically identify the vulnerabilities patients face. This is a wonderful step towards lupus care that is more holistic, equitable, personalised, and responsive to patients' real-life needs.

🔝 A huge thank you to Prof. Laurent Arnaud, Dr. Daniel Guimarães de Oliveira - Imunologia Clínica, Jeanette Andersen, and Zoe Karakikla-Mitsakou for their invaluable contributions and commitment to LUPUS-ALERT!

🌍 And a special thank you to the many physicians and patients who have come together to work on this project for the benefit of lupus patients.

🚀 #LupusAlert now moves into Step 2!!!

🔔 Stay tuned!
... See MoreSee Less

🟣 LUPUS-ALERT is moving forward!

Thanks to the amazing collaboration between healthcare professionals and patients, we’ve now identified many potential vulnerabilities that can impact access to appropriate lupus care. 

We want to extend a special thank you to all the lupus patients who responded to our call and shared the barriers patients may face: financial, social, linguistic, geographic… 

🌟 Your contribution is helping to develop a tool that will systematically identify the vulnerabilities patients face. This is a wonderful step towards lupus care that is more holistic, equitable, personalised, and responsive to patients real-life needs.

🔝 A huge thank you to Prof. Laurent Arnaud, Dr. Daniel Guimarães de Oliveira - Imunologia Clínica, Jeanette Andersen, and Zoe Karakikla-Mitsakou for their invaluable contributions and commitment to LUPUS-ALERT!

🌍 And a special thank you to the many physicians and patients who have come together to work on this project for the benefit of lupus patients.

🚀 #LupusAlert now moves into Step 2!!!

🔔 Stay tuned!
2 weeks ago

#EULAR2025 is around the corner!

🦋 Lupus Europe plays a significant role in this year's Congress, with a diverse range of exciting topics and great participation.

✅ We will be sharing insights from most of the lupus sessions on X, so don't forget to follow us!

😃 Stay tuned!
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