Alain CornetThe summer is a quieter time in terms of events to attend for LUPUS EUROPE but it is not quiet in terms of ongoing projects (including starting to build the next strategic plan for 2018-2023) and getting ready for the convention later in the year. As you know, this year’s convention will be held from […]
Alain CornetThe blog has been quiet recently, and with good reason! We have all been so busy attending events, participating in work groups and meeting face-to-face, that we haven’t been able to keep up on the blog – despite our super-human lupus powers! Hopefully you’ll know everything that has been going on from reading the […]
Alain CornetAs discussed during its Annual General Meeting last month, the European Patients’ Forum is deeply concerned with the very uncertain future of European health collaboration and of the Health Programme post-2020. The five scenarios proposed by the European Commission Mr. Junker in April show that health is not a priority for the European Union. To […]
Alain CornetAnd lots of activity ties in well with “Kick Lupus” of course 😉 For more information on Kick Lupus please read here. There have been so many initiatives for World Lupus Day it’s difficult to name them all but here are a few that deserve to be highlighted. The World Lupus Federation, of which LUPUS […]
Alain CornetMay 10th is World Lupus Day What is lupus? Lupus is a chronic autoimmune disease that causes the immune system to attack the body’s connective tissue and organs. Parts of the body affected can include the joints, kidneys, heart, lungs, brain, blood and skin. Up to 500,000 people in Europe have lupus. 90% of people […]
Alain Cornet10th of May is #WorldLupusDay and for that occasion #LUPUSEUROPE in cooperation with #LUPUSUK has created a campaign for every day in the month of May. Please feel free to share with everybody you know! In the build up to World Lupus Day, look out for our info-messages on Facebook and Twitter. Here are the first two.
Alain CornetFrom April 10th-11th EPF held its annual AGM. Katharine Wheeler attended on behalf of LUPUS EUROPE. Naturally, in the year of EPF’s campaign on Access to Healthcare, there was a strong focus on the #Access2030 campaign and putting healthcare firmly back on every politician’s agenda. A noteworthy result of EPF’s survey on Access to healthcare is […]
Alain CornetAs part of the EPF #Access2030 campaign a petition has been created to ensure that decision-makers are aware of how important people feel healthcare is and that we want it to remain very firmly on the agenda. To read more about the petition and to sign, please click here.
Alain CornetCNN has highlighted lupus and celebrities who have lupus. You can read the article here.
Alain CornetSince his amazing feat Andreas has been busy recovering and getting back to normal life, but he hasn’t forgotten about his lupus supporters and has been working on his final article, telling us all about his fantastic achievement. Lupus New York Marathon Finisher – 06.11.2016 For Lupus Warriors, Lupus Heros, Lupus Scientists, Lupus Family, Lupus Friends, […]
✅ 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.
0 CommentsComment on Facebook
🧠 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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