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#HappyEaster
4 days ago

🦋 Lupus Europe took part in the 2nd ERN RECONNET International Congress on rare and low-prevalence connective tissue diseases, held in Prague, Czech Republic, from April 9 to 11, 2025.

🙌 Happy to join clinicians and researchers to advance care for rare connective tissue diseases like #lupus!

👩 Our Chair, Jeanette Andersen, delivered a powerful session on The Patient Perspective on Telemedicine, highlighting the opportunities and challenges for people living with lupus.

📊 Alain Cornet also took the stage to share key findings from our Swiss Knife Survey, reflecting patients' priorities, unmet needs, and experiences across Europe.

🙌 Thank you to ERN ReCONNET for fostering collaboration to improve care and outcomes for people with rare connective tissue diseases!
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🦋 Lupus Europe took part in the 2nd ERN RECONNET International Congress on rare and low-prevalence connective tissue diseases, held in Prague, Czech Republic, from April 9 to 11, 2025.

🙌 Happy to join clinicians and researchers to advance care for rare connective tissue diseases like #lupus!

👩 Our Chair, Jeanette Andersen, delivered a powerful session on The Patient Perspective on Telemedicine, highlighting the opportunities and challenges for people living with lupus.

📊 Alain Cornet also took the stage to share key findings from our Swiss Knife Survey, reflecting patients priorities, unmet needs, and experiences across Europe.

🙌 Thank you to ERN ReCONNET for fostering collaboration to improve care and outcomes for people with rare connective tissue diseases!Image attachmentImage attachment+3Image attachment
2 weeks ago

😃 The Lupus Europe Board and Extended Board met last week for two full and exciting days of work on the strategic plan.

🤝 We were also joined by our colleagues from NVLE to kick off the planning of our 2025 Convention, which will take place in the Netherlands! A great opportunity to strengthen our collaboration.

👥 Finally, we also hosted an engaging Industry Roundtable, with updates, workshops and... a lot of exercises for our Industry Partners too!

💪 Speaking of exercises, don’t miss our physical activity programme designed for people living with lupus! 👉 www.lupus-europe.org/me-lupus/
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😃 The Lupus Europe Board and Extended Board met last week for two full and exciting days of work on the strategic plan.

🤝 We were also joined by our colleagues from NVLE to kick off the planning of our 2025 Convention, which will take place in the Netherlands! A great opportunity to strengthen our collaboration.

👥 Finally, we also hosted an engaging Industry Roundtable, with updates, workshops and... a lot of exercises for our Industry Partners too!

💪 Speaking of exercises, don’t miss our physical activity programme designed for people living with lupus! 👉 https://www.lupus-europe.org/me-lupus/Image attachment
2 weeks ago

🦋 Understanding lupus is crucial for effective management and self-management.

💁‍♀️ Many of us know what lupus is, and we’ve been learning from trusted resources like #Lupus100 and #LupusGPT.

🤔 But… how much do we really know about SLE?
Do we know as much as we think we do?

𝐓𝐫𝐲 #𝐒𝐋𝐀𝐊𝐄 𝐚𝐧𝐝 𝐟𝐢𝐧𝐝 𝐨𝐮𝐭❗

🎯 SLAKE (Systemic Lupus Assessment score for Essential Knowledge) is a quick and easy online tool designed for people living with lupus to test their knowledge and learn more about the disease.

📝 Just 44 questions (randomly selected from a pool of 400)
⏱️ Takes less than 5 minutes to complete
🌍 Available in 20 languages
📊 Get a score for each lupus domain + your overall knowledge score

💡 Whether you're newly diagnosed or have been living with lupus for years, SLAKE helps you identify what you already know and where there's room to grow. It’s not a test — it’s a chance to learn more and feel more empowered about your health.

📣 SLAKE has been made possible thanks to the leadership of Prof. Laurent Arnaud and Dr. Antonin Satrin, and the collaboration of an international team of lupus experts and patient representatives.

🥰 Lupus Europe has proudly contributed to this project since the very beginning, and we’re thrilled to see it now accessible for patients worldwide.

🔗 Try it today and let us know what you think!

lupusresearch.limequery.org/775349
... See MoreSee Less

🦋 Understanding lupus is crucial for effective management and self-management.

💁‍♀️ Many of us know what lupus is, and we’ve been learning from trusted resources like #Lupus100 and #LupusGPT.

🤔 But… how much do we really know about SLE?
Do we know as much as we think we do?

𝐓𝐫𝐲 #𝐒𝐋𝐀𝐊𝐄 𝐚𝐧𝐝 𝐟𝐢𝐧𝐝 𝐨𝐮𝐭❗

🎯 SLAKE (Systemic Lupus Assessment score for Essential Knowledge) is a quick and easy online tool designed for people living with lupus to test their knowledge and learn more about the disease.

📝 Just 44 questions (randomly selected from a pool of 400)
⏱️ Takes less than 5 minutes to complete
🌍 Available in 20 languages
📊 Get a score for each lupus domain + your overall knowledge score

💡 Whether youre newly diagnosed or have been living with lupus for years, SLAKE helps you identify what you already know and where theres room to grow. It’s not a test — it’s a chance to learn more and feel more empowered about your health.

📣 SLAKE has been made possible thanks to the leadership of Prof. Laurent Arnaud and Dr. Antonin Satrin, and the collaboration of an international team of lupus experts and patient representatives.

🥰 Lupus Europe has proudly contributed to this project since the very beginning, and we’re thrilled to see it now accessible for patients worldwide.

🔗 Try it today and let us know what you think!

https://lupusresearch.limequery.org/775349
LUPUS EUROPE Uniting people with Lupus throughout Europe
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