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Alain Cornet- Posted on
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#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!
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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!
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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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