Alain CornetThe final dates have been set for the Patient Panel. The Patient Panel is seeking participants and will take place in Brussels from March 11-13th 2016. This is a rare and unique opportunity for patients to participate in a truly worthwhile experience.
All costs, travel, accommodation and meals are reimbursed. For further information, please click here.
‼️ 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/
📅 Don’t miss out!
Today, 16 June, our General Secretary, Zoe Karakikla-Mitsakou, will speak alongside @G_O_Daniel at the @eular_org webinar “Implementation in real life”.
💬 They will share learnings from a co-designed lupus project on moving from SDH recognition to action.
💫 Last week at #EULAR2026, we were proud to share Alain Cornet’s poster POS0246-PARE on mapping mental health trajectories in lupus.
Presented on his behalf by Ricky Chotai, it highlights key moments across the disease journey where support may matter most.
Read it here:
🎥 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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🦋 We continue bringing you our #EULAR2026 congress recaps!
The third day was another intense day for Lupus Europe, with patient-led research, emerging science and important conversations about lived experience, as well as ongoing and potential projects to improve lupus care.
🧠 One of the highlights was Alain Cornet’s poster on mental health trajectories in lupus: “Mapping mental health trajectories in lupus: patient-identified inflection points and support opportunities from a European patient panel”.
Presented by Ricky Chotai on Alain’s behalf, this patient-led work explored how people living with lupus and mental health difficulties understand mental health across the lupus journey.
Yesterday, we already told you more about this poster and its key messages, in case you missed it!
🦠 On 5 June, we followed emerging science on the microbiome, and the Meet the EULAR Expert session “Management of joint involvement in systemic lupus” with Professor Edward M. Vital.
📊 Disease activity measurement in SLE was another important theme, especially how clinical targets can be better aligned with lived experience.
♀️ Menopause was part of the day’s conversations, highlighting the importance of asking about it routinely and recognising how hormonal transitions may shape symptoms and quality of life.
🌍 Across the day, one message kept returning: better lupus care needs science, but also communication, patient priorities and tools that help people say what matters most.
That is exactly why tools such as the Lupus Consultation Cards matter. They are available in 20 languages and help people prepare for their lupus appointments by organising symptoms, concerns and top questions in advance. Check them out here: www.lupus-europe.org/lupus-consultation-cards/
💬 We kept connecting these discussions with #LupusGPT and #EasyLupus, because access to understandable, reliable information before and after consultations is part of helping people take a more active role in their care.
🥳 And we celebrated Jeanette's birthday!
😃 Want to know more? Catch up on the latest insights from the congress in our #EULAR2026 Recap Webinar, which you can watch here: www.facebook.com/LupusEurope/videos/2035644043691260
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