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Lupus Europe is the umbrella association of currently 32 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.

Lupus Europe @LupusEurope ·

11h 2080262219795739019

‼️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.

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Lupus Europe @LupusEurope ·

14h 2080205352520593522

🤩 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!

Laurent ARNAUD @Lupusreference

✅ 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 👍

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Laurent ARNAUD @Lupusreference ·

21 Jul 2079434239821422782

✅ 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 👍

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Laurent ARNAUD @Lupusreference ·

14 Jul 2076897611051585830

✅ The #Lupus #BrainFog Severity Scale is VERY EASY TO USE 📥 Download the pdf (free openaccess 🔓) and check your score on table 3. Based on the validation study (n=378), the median LBFSS score is 25 so you can easily compare yourself to others 👍

International development of a lupus-specific instrument to assess cognitive symptoms in patients...

Introduction Cognitive symptoms such as ‘brain fog’ are frequent and disabling in patients with SLE. We aimed to...

doi.org

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Lupus Europe @LupusEurope ·

20 Jul 2079191898833440921

🧠 Brain fog is one 🔝 challenging symptoms of lupus, yet there was no specific way to measure it... Until now!

Prof @lupusreference & our Chair @jeanette_lupus explain the new Lupus Brain Fog Severity Scale #LBFSS.

Lupus Europe is proud to have contributed to its development

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Laurent ARNAUD @Lupusreference ·

15 Jul 2077254866599104693

✅ Comparison of #LBFSS - #Lupus #BrainFog Severity Scores in 378 lupus participants with and without brainfog 🌪🌩🦋 The median LBFSS value is 25 (in the 0-52 score) in those with brainfog, which is really easy to remember 👍 DOWNLOAD the full study 📥 at https://doi.org/10.1136/lupus-2026-002148

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Laurent ARNAUD @Lupusreference ·

18 Jul 2078427696900579335

✅ Interested in knowing more about #brainfog in #lupus? And more particularly about the use of the #LBFSS? Check our video below as well as table 3 in the openaccess paper at https://lupus.bmj.com/content/lupusscimed/13/2/e002148.full.pdf

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Laurent ARNAUD @Lupusreference ·

14 Jul 2077021096931467478

- Do you have #LUPUS? 🦋
- Do you have #BRAINFOG? ⛈
- If so, check the Lupus Brainfog Severity Scale (#LBFSS)
- Using table 3 you can assess the SEVERITY of your brainfog and compare with others
🔓 OPENACCESS FREE LINK: https://doi.org/10.1136/lupus-2026-002148

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LUPUS EUROPE

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LUPUS EUROPE

3 days ago

🧠 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.

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LUPUS EUROPE

1 week ago

🦋 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!

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LUPUS EUROPE

2 weeks ago

☀️ As we close our #LupusUVprotection campaign, here is one important reminder:

👉 UV protection in lupus is not only about sunny beach days.

😶‍🌫️ UV exposure can happen on cloudy days, near some windows, while travelling by car, or through certain artificial light sources. And in some people with lupus, its effects may not appear immediately.

‼️ That is why clear, reliable information matters.

Whether you have questions about UV light, photosensitivity, skin symptoms, flares, fatigue, daily life with lupus, or many other lupus-related topics, Lupus Europe provides free, reliable and multilingual tools to support you:

🔹 #𝗟𝘂𝗽𝘂𝘀𝟭𝟬𝟬
Patient-friendly answers to 100 key questions about lupus, including sun exposure and UV protection
lupus100.org/en/questions/can-i-sunbathe-with-lupus

Created with lupus experts & patients. Available in 19 languages.

🔹 #𝗟𝘂𝗽𝘂𝘀𝗚𝗣𝗧
A free artificial intelligence tool to help people find reliable, valid lupus information in almost any language.:
lupusgpt.org/

🔹 #𝗘𝗮𝘀𝘆𝗟𝘂𝗽𝘂𝘀
Like LupusGPT, but designed to make the answers even easier to understand:
easy.lupusgpt.org/

🦋 Because lupus does not only affect clinic appointments. It affects everyday life.

✅ Stay informed. Ask questions. Use reliable resources. ... See MoreSee Less

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LUPUS EUROPE Uniting people with Lupus throughout Europe