Alain CornetDid you know? Lupus is a Rare Disease! Lupus is rare, but not for us! Come and join us working on our vision: A fulfilling life for all people with Lupus in Europe until we have reached a world without Lupus What is a rare disease? It changes from country to country, but in Europe […]
Alain CornetWe would very much like to share some news with you! If you are a Lupus Europe member or potential member, volunteer or potential volunteer, or simply a member of the patient community interested in the activities of LUPUS EUROPE, join us on February 17, 2020 at 20:00 Paris time. On the agenda:– Introduction of […]
Marisa Costa20th annual European Congress of Rheumatology took place in Madrid in June 2019. The Congress was hosted by the European League Against Rheumatism (EULAR) and jointly organised with the Paediatric Rheumatology European Society (PReS). There were 14,500 attendees from 120 countries and the scientific programme included presentations from 4,900 abstracts submitted. Three Trustees attended the […]
Alain Cornet30 Years ago, on May 26, 2019, LUPUS EUROPE’s Constitution (then under the name of ELEF) was signed… The European Lupus Federation was born. as we celebrate this anniversary, we asked current and past Chairs to reflect on those years in support of People living with lupus in Europe. Yvonne Norton, Chair from 2002 […]
Alain Cornet“INTEGRATing patient reported outcomes, clinical data and quality indicators to physician drive data in clinical management of chronic rheumatic diseases: the paradigm of Systemic Lupus Erythematosus” You may recall a request from Lupus Europe, on behalf of the Integrate Project, to complete an on-line survey. Over 750 people completed the questionnaire which is a fabulous […]
Alain Cornetin only 2 days, the INTEGRATE and ERN ReCONNET surveys will be closed. Yet, we miss feedback from several countries, and only have 1 or 2 answers from others. It would really help our understanding of lupus and the interactions with Doctors if we had more answers from more locations. please help us gather that […]
Katharine WheelerThe LUPUS EUROPE 2018 convention is underway in Leuven, Belgium and among the serious speeches on medical and psychological topics, we were delighted to be presented the beautiful (and very creative) word cloud entries in the Kick Lupus competition. All in all there were 35 entries to the competition, a great response! The judges on […]
Alain CornetIn 1989, LUPUS EUROPE (then named ELEF)’s first convention took place near Brussels, in the historical city of Leuven. 29 years later, LUPUS EUROPE 2018 annual convention will once again take place in Leuven, and we are looking towards a record attendance with already 41 registrations confirmed. As the convention unfolds, we will make available […]
Alain CornetToday is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals. Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from […]
Alain CornetWe at LUPUS EUROPE wish you all a great World Lupus Day, full of hope and awareness! For this we have created a little animated video about LUPUS EUROPE. Please feel free to share! [wpvideo ILoguQxs] We would also like to repost a video made a couple of years ago about the importance of World […]
✅ Why some patients with #Lupus 🦋 have #brainfog remains unknown, but for sure the collective impact of brainfog is significant. Check our initial #LBFSS data about the FREQUENCY, INTENSITY & DURATION of brainfog 👀 in #SLE
📥 FULL (openaccess) paper: https://doi.org/10.1136/lupus-2026-002148
🧠 “Your experience of brain fog is real. It is common. It deserves attention.”
Prof @lupusreference & our Chair, @Jeanette_Lupus, explain how people living with #lupus helped shape the #LBFSS from the very beginning.
📖 Read the study: https://lupus.bmj.com/content/13/2/e002148
✅ If you have #lupus, PLEASE HELP US with the #CORRELATE study 👀🙏🔁 it will take just 5 minutes of your time and help us understand #brainfog
Take the study: https://lupusresearch.limequery.org/485358?lang=en
✅ Why some patients with #Lupus 🦋 have #brainfog remains unknown, but for sure the collective impact of brainfog is significant. Check our initial #LBFSS data about the IMPACT on LIFE, RELATIONSHIPS & WORK 👀 in #SLE
📥 FULL (openaccess) paper: https://doi.org/10.1136/lupus-2026-002148
✅ Check our latest contribution with @ERAkidney in @NatRevNeph on disease modification 🔥 in #lupus #nephritis & understand how an in-depth knowledge of #immunology can help selecting the best treatment at the individual patient level 🎯
📥 LINK: https://doi.org/10.1038/s41581-026-01103-y
‼️Today is #WorldSjogrensDay, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.
💁♀️ Although Sjögren's is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.
➡️ Follow @SjogrenEurope to know more.
🤩 Exciting to see #COGNILUP reach this next step!
🧠 Healthy volunteers will help establish reference values, bringing us closer to a free, accessible tool for people with #lupus to understand their cognitive function.
💜 Congratulations to Prof @lupusreference & all involved!
✅ Now that the #LBFSS is available for #brainfog, we are moving forward to TEST OBJECTIVE COGNITIVE FUNCTION 🧠 in #lupus 🦋 with #COGNILUP, for FREE, for ALL.
The platform is entering its calibration phase with healthy volunteers so that we can know the norms for each test 👍
✅ Thank you @LupusEurope for highlighting the #Lupus #BrainFog Severity Scale (#LBFSS). This new PRO specifically designed for assessing the SEVERITY OF BRAINFOG was co-developed with the participation of patients from @LupusEurope at every step 👍
🧠 As lupus specialist Prof Laurent Arnaud clearly states, “Your experience of brain fog is real. It is common. It deserves attention.”
That is why the Lupus Brain Fog Severity Scale (LBFSS) was developed: to provide a lupus-specific way to assess the severity and impact of brain fog and related cognitive symptoms.
Importantly, people living with lupus were not simply asked to approve a finished questionnaire. Their own descriptions of brain fog were the starting point for its development.
🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain how people living with lupus helped shape the #LBFSS from the very beginning.
🦋 Lupus Europe is proud to have contributed to this international work and to have supported meaningful patient involvement throughout the development process.
📖 Read the study:
lupus.bmj.com/content/13/2/e002148
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‼️Today is #WorldSjogrensDay, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.
💁♀️ Although Sjögren's is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.
➡️ Follow Sjögren Europe to know more.
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🧠 Brain fog is real.
For many people living with lupus, it affects everyday life, yet it has often remained difficult to measure.
✅ The new Lupus Brain Fog Severity Scale (LBFSS) is the first questionnaire designed specifically to assess brain fog in lupus.
🦋 Lupus Europe is proud to have contributed to its development through meaningful involvement of people living with lupus. It's another example of how patient perspectives help shape better research and better tools.
🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain why the LBFSS is such an important step forward in lupus care.
lupus.bmj.com/content/lupusscimed/13/2/e002148.full.pdf
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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.
📝 44 questions, randomly selected from a pool of 394
⏱️ Around 15 minutes to complete
🌍 Available in 20 languages
📊 A score for each lupus domain and an 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 is room to grow. It is not about passing or failing. It is a chance to learn more and feel more confident when taking part in decisions about your health.
📣 The SLAKE study is still open! By taking part, you are helping researchers understand which aspects of lupus are well understood and where important knowledge gaps remain.
These insights could help guide the potential development of better information resources and tools, tailored to the real needs of people living with lupus in different countries and regions.
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 encourage people living with lupus worldwide to take part while the study remains open.
🔗 Complete SLAKE today and let us know what you think!
lupusresearch.limequery.org/775349
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