Alain CornetWe are happy to share a video for World Lupus Day where Claudine, Jane and Jeanette speak of the importance of such an event.
[youtube https://www.youtube.com/watch?v=ae14ZLCdbqg&w=560&h=315]
🎥 Our #EULAR2026 recap webinar is now on YouTube!
Lupus Europe volunteers bring back some key learnings: fatigue, pain & lived experience, #LupusGPT, access, youth co-creation & new research directions.
Thank you to those who helped make this possible
https://f.mtr.cool/ryytqqlxop
🙏 Thank you @LupusEurope and thank you as well to all those living with #lupus who have participated from the first step of #Brainfog qualitative assessment to the final validation of the #LBFSS - This new #PRO was made WITH you and FOR YOU 🦋
‼️ Although not everyone is photosensitive, UV exposure could trigger flares in some people with #lupus.
☀️ UV rays are present year-round! Always protect your skin. Especially this Summer!
🤔 Questions? Explore reliable resources like #Lupus100 or ask #LupusGPT or #EasyLupus!
Huge congratulations, Professor @Lupusreference! 💜
🥰 Lupus Europe is proud to have been part of this project from the very beginning.
🧠 Brain fog is one of the symptoms that many people with lupus struggle to explain and have recognised.
🙌🏻 This instrument is a very
✅ Dear #lupus patients, I am very happy to report that the LBFSS manuscript (Lupus #Brainfog Severity Scale) just got accepted for publication @Lupus_SM 🦋 I am very happy as this is the first SLE-specific #cognition symptom score in SLE and will help so many people 🙏
✅ Dear #lupus patients, I am very happy to report that the LBFSS manuscript (Lupus #Brainfog Severity Scale) just got accepted for publication @Lupus_SM 🦋 I am very happy as this is the first SLE-specific #cognition symptom score in SLE and will help so many people 🙏
🦋 Our final #EULAR2026 recap is here!
From @Jeanette_Lupus packed Meet the Expert Session on #LupusGPT & #EasyLupus to seeing Lupus Europe’s work recognised in the @eular_org highlights, the last day brought real visibility to work on trusted lupus information, communication, &
✅ Have you checked the @TheLancetRheum publication about #LupusGPT? If not, have a look at it: https://doi.org/10.1016/S2665-9913(25)00370-4
🦋 Our recap for 5 June at #EULAR2026 is now out!
Read more about key lupus moments from day 3, from lived experience to tools that help people say what matters most.
Don’t miss out on the latest on menopause in RMDs, our poster on mental health & more!
https://www.linkedin.com/posts/lupus-europe_eular2026-lupusgpt-easylupus-activity-7472961160628199424-VXZu/
☀️ #heatwave can affect your health, especially if you have #lupus.
The WHO notes that hot weather can exacerbate existing medical conditions and that people with chronic illness may be more vulnerable during periods of extreme heat.
Has your doctor ever spoken to you about how to stay safe during extreme heat?
Reliable information can help you plan ahead and protect your health.
Before and during a heatwave:
✅ Plan essential outdoor activities for cooler hours
✅ Stay in the shade and keep indoor spaces as cool as possible
✅ Drink water regularly
✅ Avoid alcohol and limit sugary or caffeinated drinks
✅ Protect yourself from UV light if you need to go outside
✅ Check how your medicines should be stored
✅ Seek medical advice if you experience unusual symptoms or if symptoms persist
❓ Questions about lupus, UV and heat?
Explore reliable lupus information through #Lupus100, #lupusgpt or #easylupus. Free, multilingual, anonymous tools and resources, validated by lupologists and patients.
Save this post and share it with someone who may need it this summer.
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🎥 Missed our #EULAR2026 recap webinar?
The recording is now available on YouTube.
In this session, Lupus Europe volunteers bring back some key lupus-related learnings from EULAR 2026 from fatigue, pain & lived experience, to LupusGPT, access, youth co-creation and new research directions.
A huge thank you again to everyone who helped make this webinar possible.
Watch here:
f.mtr.cool/ncqeapqfjt
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☀️ UV light and lupus: it is 𝗻𝗼𝘁 ❞𝗷𝘂𝘀𝘁 𝘀𝘂𝗻𝘀𝗵𝗶𝗻𝗲❞.
🔴 For many people living with lupus, sun and UV exposure can affect much more than Summer plans.
In the Lupus Europe Living with SLE in 2020 survey, photosensitivity was 𝗿𝗲𝗽𝗼𝗿𝘁𝗲𝗱 𝗯𝘆 𝟲𝟴.𝟱% of respondents.
😔 Furthermore, in Lupus Europe’s Swiss Knife Survey 2024, 25.8% of respondents said 𝘀𝘂𝗻 𝘀𝗲𝗻𝘀𝗶𝘁𝗶𝘃𝗶𝘁𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗲𝗱 𝘁𝗵𝗲𝗺 𝗳𝗿𝗼𝗺 𝗹𝗶𝘃𝗶𝗻𝗴 𝗹𝗶𝗳𝗲 𝘁𝗼 𝘁𝗵𝗲 𝗳𝘂𝗹𝗹𝗲𝘀𝘁.
💥 The potential effect of the UV rays in lupus can influence when people go out, what they wear, how they plan holidays, whether they join outdoor activities, and how much they need to explain their choices to others.
𝗧𝗵𝗮𝘁 𝗺𝗮𝘁𝘁𝗲𝗿𝘀.
❌ Sun sensitivity may sometimes be seen as a “minor” symptom, but 𝗶𝘁𝘀 𝗶𝗺𝗽𝗮𝗰𝘁 𝗰𝗮𝗻 𝗯𝗲 𝘀𝗶𝗴𝗻𝗶𝗳𝗶𝗰𝗮𝗻𝘁. It can affect work, education, personal relationships, social life and mental wellbeing. It can also affect the people around someone living with lupus, from family and friends to colleagues who may not always understand why plans need to change.
Have questions about lupus and UV light?
Explore reliable information through #Lupus100 or ask #LupusGPT or #EasyLupus.
Swiss Knife Survey 2024:
f.mtr.cool/nsgolzfaek
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🦋 Our final #EULAR2026 recap is here!
🌍 We started the day in the session “Next-Gen Treatments: CAR-based Therapies and Beyond in RMDs”, chaired by our Chair, Jeanette Andersen.
The session explored new therapeutic frontiers, but also the responsibilities that come with them. For us, one message remains essential: innovation must be developed with patients, not only for patients.
💬 Jeanette also delivered the PARE Meet the EULAR Expert session “AI as a Partner in Care: Empowering the RMD Community with Information”.
The room was packed, showing the strong interest around #LupusGPT and #EasyLupus as powerful patient-led, validated digital tools that help people living with lupus access reliable, understandable information in almost any language.
The many questions from attendees showed how relevant this topic has become for healthcare professionals, researchers, patient representatives and the wider rheumatology community.
🧬 We also followed the “How to treat SLE” session with George Bertsias, who focused on current and evolving approaches in lupus care, including treat-to-target strategies, remission or low disease activity, and the importance of reducing long-term organ damage.
🦴 Later, Edward Vital led the Meet the EULAR Expert session on “Management of joint involvement in systemic lupus”, a topic that matters deeply to many people living with lupus.
💜 A special highlight of the day was seeing Lupus Europe’s work recognised during the EULAR highlights another year.
These sessions take place at the very end of the Congress and bring together the key takeaways from #EULAR2026. Importantly, there are no parallel sessions at that time, which means there is no competition with other talks, and most of the attendees are in the room.
🙏 Thank you to everyone who followed, shared, visited us, spoke with us and supported us throughout #EULAR2026.
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