Alain CornetWhen I got my lupus diagnosis in 2011 I was a very active young woman with a teaching job and on my way to study for a PHD at Aarhus university. I have a master’s degree in German and Philosophy and I loved teaching. I used to be a fitness instructor during my studies and […]
Alain CornetAs we approach World Lupus Day again, it’s a good time to share the video made last year about the importance of World Lupus Day. Feel free to share! [youtube https://www.youtube.com/watch?v=ae14ZLCdbqg&w=560&h=315]
Alain CornetWorld Lupus Day is just one week away… The World Lupus Federation which encompasses the LFA, LUPUS EUROPE and other world Lupus organisations, has set up a website specially dedicated to World Lupus Day. On the site you can find out more about different activities throughout the world, download a Lupus toolkit and sign the petition […]
😃 ¿Has probado #SLAKE? Si tienes #lupus, ¡te la recomendamos al 100%!
#SLAKE is not just a quiz to test your knowledge about lupus — it's the first step toward personalised education 🙌 .
🔜 tailored digital content to help reinforce what you need most!
Check out this great slide by Prof. @Lupusreference 👇
✅ What's the plan with #SLAKE?
First, that anyone living with #lupus can test her/his essential knowledge about #SLE,
THEN that we (will) provide on-demand personalized digital content (educational videos mostly), tailored to the knowledge that needs to be reinforced 💪
🦋 How much do you really know about lupus?
Try #SLAKE — a quick, easy tool (available in 20 languages) to assess your #lupus knowledge!
👉 Take it now + keep learning at #Lupus100 & #LupusGPT!
https://maladie-autoimmune.fr/SLAKE/
cc @Lupusreference
💫 Do you know #SLAKE?
🦋 We are proud to have contributed to this exceptional tool from the beginning. This is a tool that can help enhance patients' knowledge of #lupus 👏
I would like to thank Antonin Satrin, who does his MD thesis on #SLAKE as well as our international groups of lupus experts & patient-experts including @LupusEurope & @Lupus_Chile. #SLAKE is now a @ERN_RECONNET project and we're proud of this as it will come in 15+ languages 👍
✅ T2T in #Lupus 👀 ⬇️⬇️
📥 LINK https://authors.elsevier.com/a/1kdub5alwYF%7EsD
#NosVemosEnPANLAR2025
🇪🇺On March 27, we held our General Assembly, bringing together all our member organisations to share updates & discuss future plans.
Also, @StopArtritis was admitted as member!
Welcome! We're excited to work together towards a fulfilling life for all people with lupus in Europe
✅ If you have #LUPUS and would like to test #SLAKE, our DIGITAL study designed to TEST your level of ESSENTIAL KNOWLEDGE about #SLE, please go to:
-English: https://lupusresearch.limequery.org/775349?lang=en
-Español: https://lupusresearch.limequery.org/775349?lang=es
Or go to English and select one of the 15 available languages 👌
🦋 How much do you really know about lupus?
Stop wondering — find out now with SLAKE, the Systemic Lupus Assessment score for Essential Knowledge.
✔️ Quick and easy
✔️ Just a few minutes
✔️ Available in 20 languages
✔️ Get your personal lupus knowledge score
SLAKE is not a test — it’s a tool designed to help you understand which areas of lupus you already know well and where you could learn more.
And if you want to keep learning, remember to visit #Lupus100 and #LupusGPT — two reliable resources to improve your lupus knowledge.
Don’t wait any longer.
👉 Click the link, choose your language, and take SLAKE today!
maladie-autoimmune.fr/SLAKE/
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🇪🇺 On March 27, Lupus Europe held its General Assembly, bringing together all our member organisations.
🗳️ We shared updates, discussed future plans, and welcomed Udruženje obolelih od reumatskih bolesti Republike Srbije - ORS as our newest member! 🎉
💜 Welcome to the family! We're excited to work together towards a fulfilling life for all people with lupus in Europe, until we have reached a world without 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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