Alain CornetHas your member group registered for the LUPUS EUROPE convention yet? Remember that the deadline for special conditions is 15th June 2016. The convention will take place in the beautiful historical city of Würzburg, Germany from 28th September – 2nd October 2016. It is also an important occasion for our hosts, the German Lupus association, who are […]
Alain CornetThis week Andreas’ is running with the German Lupus association who are celebrating their 30th anniversary this year – and hosting our annual LUPUS EUROPE convention as part of those celebrations. Click the flag to see more.
Alain CornetWhat does quality of healthcare mean for you? Take the EPF survey! Deadline: 31st May 2016 Quality of healthcare is at the heart of European Patients’ Forum’s work. EPF is conducting a survey which aims to explore the perceptions of patients about what “quality” means for them, and what matters most in quality of care. Please note […]
Alain CornetThis week, our marathon hopeful, Andreas is running for France’s two lupus associations. This is a great opportunity to highlight a couple of World Lupus Day initiatives taken by these two associations. AFL + chair, Marianne Rivière, was interviewed for “pourquoi docteur”. You can find the full interview (in French) here. Among other activities planned […]
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 CornetFor World Lupus Day, Anne Charlet, vice chair of LUPUS EUROPE, was interviewed by MedTech. When Anne Charlet’s teenage daughter complained of extreme fatigue, she thought it was just end-of-school year tiredness or anaemia. But a precautionary blood test that revealed an unusually low platelet count led to a completely unexpected diagnosis several months later: […]
Alain CornetMy Lupus story doesn’t start in 1993 with an SLE diagnosis, but eight years earlier in 1985, when at the age of 22 I got pneumonia for the first time. O spent two weeks in hospital with a horde of doctors around my bed wondering why antibiotics weren’t working. The oldest doctor mentioned that I […]
Alain CornetWhen it was first suggested that I write a patient story for Lupus Europe, I have to say that I felt a little uncomfortable. Firstly, I’m an intensely private person and have so far never wanted to write about myself or write a blog. Secondly my ‘lupus’ is relatively mild (in the medical sense rather […]
Alain CornetI met my Lupus on a sunny day of April 2003 when I was 23 years old. A year ago, I was hospitalized because I fainted with seizures. At the time, the doctors told me that anyone can have such episodes once or twice during their life. However, a neurologist in training thought that I was […]
Alain CornetMy story – by Yvonne from the Netherlands On 6 July 2004, I woke up with a tremendous pain in my right hand. Because I also had a slight rash, my GP immediately referred me to a dermatologist. He examined me and referred me to a rheumatologist because he had a hunch what might be […]
😃 ¿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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