Join the Lupus Europe Patient Panel for Men – Apply Now!

Lupus Europe is organising a Patient Panel for Men this autumn and there are a few remaining spots available for those who want to apply!

📍 Where: Leuven, Belgium
📅 When: (Arrival) Friday 31 October in the afternoon – Sunday 2 November 2025 (departure after lunch)
👥 Who is organising: Lupus Europe. The Panel will be animated by Andreas Panteli (Lupus Suisse) & Ricky Chotai (Lupus Europe)

Much remains to be discovered about lupus. Not just disease mechanisms or new treatments, but also a better understanding of what it means to live with lupus, the day to day realities faced by patients, the impact on social and psychological functioning. To help people living with lupus bring their life experience to the table, Lupus Europe created Patient Panels, by and for people with lupus. The panels bring together 10-15 persons living with lupus from all over Europe to discuss a topic of interest. Discussions are animated by People living with lupus themselves, creating a unique atmosphere in the group, and allowing to speak in full confidence, without anyone else in the room. Participants can simply be themselves and speak in their voice.

Who can apply:

Any man living with lupus in Europe
Can speak conversational English (doesn’t need to be perfect)
Want to meet other men

What we provide:

All reasonable travel and hotel costs paid by Lupus Europe
Sessions made by men with lupus, for men with lupus
Time to ask questions
Chance to make friends and get support

How to apply:

Send an email to secretariat@lupus-europe.org
Tell us why you want to join
Apply by September 15^th 2025

Apply now! Don’t delay!

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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.

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Laurent ARNAUD @Lupusreference ·

25 Jul 2080866364634329253

✅ 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

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Lupus Europe @LupusEurope ·

29 Jul 2082452063569510599

🧠 “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

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Laurent ARNAUD @Lupusreference ·

25 Jul 2080869193512104210

✅ 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

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Laurent ARNAUD @Lupusreference ·

26 Jul 2081348054758638058

✅ 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

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Laurent ARNAUD @Lupusreference ·

24 Jul 2080516853395239365

✅ 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

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Lupus Europe @LupusEurope ·

23 Jul 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 ·

23 Jul 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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🧠 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 ... See MoreSee Less

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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. ... See MoreSee Less

‼️Today is #Worl

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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 ... See MoreSee Less

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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 ... See MoreSee Less

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LUPUS EUROPE Uniting people with Lupus throughout Europe