Alain CornetInput is being sought from European Patients’ Forum members on the Patient Empowerment Charter. The deadline for feedback is 10th January 2016. For more information please click here.
The European Patients’ Forum has also put together its draft position paper on Cross Border Healthcare. Feedback is invited from member groups. More information here.
😃 ¿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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