Lupus Europe

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]

😱 New kid on the block!

✅ Lupus Europe proudly presents the Lupus Consultation Cards: a tool designed to help both patients & HCPs structure consultations & support more focused discussions.

🌍 Available in 18 languages!
📥 Download: https://t.co/3MeKw54wR5

#MakeItCount

[Lupus Europe @LupusEurope]

💊 Adherence works best when patients & healthcare professionals work as a team.

Patients need a safe space to explain what makes it difficult. HCP need to ask the right questions.

Prof Nathalie Costedoat-Chalumeau explains why this conversation matters

https://t.co/wtoXfv82mF

[Laurent ARNAUD @Lupusreference]

🚨 These days the sun 🌞 is shining 💥 Let's keep in mind the importance of #photoprotection 😎 if you have #Lupus. Ultraviolet (UV) radiations can be very damaging for Lupus skin 🔥 with apoptosis of keratinocytes and interferon release ⚡
Check4more: https://t.co/femUUhH2cR

[Laurent ARNAUD @Lupusreference]

✅ With #CORRELATE, we deploy a full research program for #cognition in #lupus and other #autoimmune diseases
-Step 1: assess cognitive (subjective) SYMPTOMS - milestone accomplished with the #LBFSS (https://t.co/U8BoeiXfDN)
-Step 2: assess cognitive FUNCTION with #COGNILUP

[Laurent ARNAUD @Lupusreference]

✅ Check our latest publication in @NatRevNeph about Disease modification in #lupus #nephritis: towards a pathophysiology-based treatment paradigm 🎯
👀 Read-only link: https://t.co/6I7tQ3n7iA

[Laurent ARNAUD @Lupusreference]

✅ 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://t.co/U8BoeiXfDN

[Lupus Europe @LupusEurope]

🧠 “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://t.co/4PdnUKSyyz

[Laurent ARNAUD @Lupusreference]

✅ 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://t.co/10Vg8KPfnJ

[Laurent ARNAUD @Lupusreference]

✅ 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://t.co/U8BoeiXfDN

[Laurent ARNAUD @Lupusreference]

✅ 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://t.co/So5u1UKFNY

[Lupus Europe @LupusEurope]

‼️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.

[Lupus Europe @LupusEurope]

🤩 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 👍

[Lupus Europe @LupusEurope]

@Lupusreference ❤️

[Laurent ARNAUD @Lupusreference]

✅ 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 👍

[Laurent ARNAUD @Lupusreference]

✅ 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 👍
https://t.co/U8BoeiXfDN

[Lupus Europe @LupusEurope]

🧠 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

[Laurent ARNAUD @Lupusreference]

✅ 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://t.co/U8BoeiXfDN

[Laurent ARNAUD @Lupusreference]

✅ 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://t.co/uolVusm0lk

[Laurent ARNAUD @Lupusreference]

- 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://t.co/U8BoeiXfDN

[Laurent ARNAUD @Lupusreference]

✅ Our novel @ERN_ReCONNET #ELICIT methodology is published!!!! 👍 #ELICIT is an innovative approach to gather #CONSENSUS 🤝 on complex, 'high-level' concepts related to rare connective tissue and musculoskeletal diseases 🔥
Openaccess 🔓 DOWNLOAD at: https://t.co/E6gHeZXyqW

[Ihsane Hmamouchi @epirheum]

AI as a partner in care. LupusGPT , free, multilingual, 189 countries, 65k questions answered. And when it doesn't know? It says so.
Multilingual ; codesign ; that's what makes the difference. Bravo @LupusEurope 👏 This needs to become the standard.
#EULAR2026 #DigitalHealth