GSK is looking for patients with cutaneous lupus to share their experiences.
For more details please click here.
GSK is looking for patients with cutaneous lupus to share their experiences.
For more details please click here.
#HappyEaster
✅ Happy to report that the @ERN_RECONNET #CROSSADAPT methodology for the cross-cultural adaptation of PROs for (rare) #autoimmune diseases has been accepted for publication 😊 With #CROSSADAPT we are now able to develop new PRO instruments simultaneously in MULTIPLE languages 👍
✅ Happy to present several activities developed with @ERN_ReCONNET:
#SLAKE the essential knowledge score for #Lupus
The recommendations for rare #SLE manifestations
#RPQoL the disease-specific quality of life instrument for relapsing #polychondritis
and many more!!!
🌟 An inspiring 3-day journey in Prague! The 2nd ERN ReCONNET Scientific Congress (Apr 9–11) gathered experts, researchers & patients to share knowledge, boost collaboration & advance care in rare connective tissue diseases.
Thank you all! 💙 #ERNReCONNET #Prague2025
🚀Join us on our #EMEUNET - Country Liaison Clinical Topics Webinar Series: "CAR T Cells and T Cell Engagers in Autoimmune Diseases"
💻Monday, 26 May 2025, 18:00-18:45 CET
Speaker:
🗣️Prof. Jerome Avouav
Moderator:
🗣️Dr. Marc Sherlinger
Register here👉https://pulse.ly/tsy8yzikzl
✅ Today is the perfect day to test your essential #Lupus knowledge with #SLAKE ⬇️ We are already taking into account the feedback received and preparing a v2.0 with more languages and the responses shown 👍
✅ Therapeutic adherence (taking treatments as prescribed) slide 2 @ern_reconnet ➡️ Understanding WHY treatments are not taken as prescribed, because it changes the advice we can give to #patients🙏
😃We are at the @ern_reconnet International Congress on rare and low prevalence connective tissue disease!
🦋Happy to join clinicians and researchers to advance care for rare connective tissue diseases like #lupus!
🦋 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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😃 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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🦋 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
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Welcome to Lupus Europe. To join our pan-European community, please contact us.
Info Center: https://www.lupus-europe.org/me-lupus/lupus-europe-info-center/
Survey Center: https://www.lupus-europe.org/me-lupus/lupus-europe-survey-center/
Blog: https://www.lupus-europe.org/blog/
Videos: https://www.lupus-europe.org/videos-on-demand/
Facebook: https://www.facebook.com/LupusEurope
Twitter: https://twitter.com/LupusEurope