Lupus Europe
@lupuseurope.bsky.social
Lupus Europe is the umbrella association of currently 31 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.
💊 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://youtu.be/hNlDFIGck7E
🧠 “Your experience of brain fog is real. It is common. It deserves attention.” Prof Laurent Arnaud & our Chair, Jeanette Andersen, 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
‼️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.
🧠 Brain fog is one of the most challenging symptoms of lupus, yet there was no specific way to measure it... Until now! Hear Prof Laurent Arnaud & our Chair, Jeanette Andersen, explain the new Lupus Brain Fog Severity Scale #LBFSS. Lupus Europe is proud to have contributed to its development
✅ #SLAKE is still open! 🦋How well do you understand #lupus? Try #SLAKE: a 15-minute quiz created by Prof Laurent Arnaud & the SLAKE team with major support from Lupus Europe & ERN ReCONNET. ✔️20 languages ✔️Different questions every time you use it https://maladie-autoimmune.fr/SLAKE/
☀️ As we close our #LupusUVprotection campaign, remember: reliable information matters. Have questions about UV light, symptoms & #lupus? 🔹 #LupusGPT: free, anonymous AI tool to help people find reliable, valid lupus information in almost any language https://lupusgpt.org/
🤩 Lupus Europe is at #WCRSD2026! 👩 Our Vice-Chair & Secretary, Annemarie Sluijmers, is at this event organised by ERN Skin & the René Touraine Foundation. 🟪 Skin matters in lupus: in our 2020 survey, skin was affected in 59.4% of respondents. https://f.mtr.cool/snsdbfrskp
Solar radiation is composed, among others, of: 🔸 Infrared (IR). 🔸 Visible light. 🔸 Ultraviolet (UV) light, which has 3 types: UVA, UVB and UVC. 🔴 UV radiation is most associated with flare risk and exacerbation of symptoms in #lupus. Some UV facts 🧵 ⤵️ #LupusUVprotection
😃 Today we are taking part in the DORIS+ meeting alongside clinicians➕researchers like @anisurrahman.bsky.social & @ioannisparodis.bsky.social. 🦋 DORIS+ builds on the original DORIS definition & explores deep remission, with relevance for research, care & people living with #lupus
🎥 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 youtu.be/IrKhqTZhX-s?...
‼️ 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!
🦋 Our final #EULAR2026 recap is here! From Jeanette’s packed Meet the Expert Session on #LupusGPT to seeing Lupus Europe’s work recognised in the @eular.org highlights. Read it now 👉 https://f.mtr.cool/mhxjconurv
🦋 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! www.linkedin.com/posts/lupus-...
💫 Last week at #EULAR2026, we were proud to share Alain Cornet’s poster 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. distribution-congress.eular.org/from.storage...
💜 Thank you for attending our #EULAR2026 Recap Webinar! 7 presentations as speakers 3 presentations as chairs 66 sessions attended 318 presentations followed But behind the numbers, there is something even stronger: the people, the energy & the Lupus Europe family spirit. Thanks for your support!
⏰ Just 1 hour left for our #EULAR2026 highlights webinar! 😨 You haven't registered yet? Don't worry! We have great news for you! ✅ You can still catch all the insights live on our Facebook page https://www.facebook.com/LupusEurope Join us at 19h CET to explore key takeaways from the Congress!
🌟Our #EULAR2026 highlights webinar is tomorrow! 👨⚕️Some of the presenters will share key takeaways from their talks in short videos. 🦋Also, some of our PAN members will share their insights from the Congress. Don’t miss this opportunity! Register now by ✉️ secretariat@lupus-europe.org
🎥 Our Chair, Jeanette Andersen, explains at #EULAR2026 what #LupusGPT is and why reliable, understandable #lupus information matters. Watch the full interview: https://www.youtube.com/watch?v=plqZt7J142I Thank you @eular.org for giving space to patient-led innovation on EULAR TV!
📣Don’t forget! Our #EULAR2026 Recap Webinar is coming up on June 15 at 19:00 CET, Learn some key highlights from one of our most exciting congresses in recent years, including scientific insights brought directly by speakers through short videos. 📩 Register now! email secretariat@lupus-europe.org
🦋What an amazing second day at #EULAR2026! A 🔝 day for Lupus Europe, with Zoe presenting #LupusGPT & our local patient panel work, and Jeanette speaking about non-pharmacological treatment & co-chairing. Read our day 2 recap https://www.linkedin.com/feed/update/urn:li:activity:7470063565056610305
🦋Last week at #EULAR2026, Lupus Europe covered key lupus-related sessions, posters & discussions through our PAN and Board members. From fatigue to Sex & Lupus, SDH, digital tools & patient communication. Read the full recap: https://www.linkedin.com/feed/update/urn:li:activity:7468236374270291968
🤩 #EULAR2026 has been a blast! Now it’s time to look back at some of the key lupus-related insights, data & messages from this year’s Congress. Join us for our @eular.org recap webinar! 📅June 15 🕖 19:00 CET ✅ To register, email secretariat@lupus-europe.org Don’t miss it!
🤩 What an amazing #EULAR2026! Congratulations to @eular.org and the whole team for the 🔝 organisation and speaker line-up. We leave London happy & proud of Lupus Europe’s contribution this year, from patient-led research to #LupusGPT & the patient voice across sessions. See you at #EULAR2027!
A useful checklist from Gerd R. Burmester on how to avoid hallucinations in LLMs: ✅ Clear context ✅ Trusted sources ✅ Verified data ✅ “I don’t know” when needed For #LupusGPT, we also added validation by doctors and patients to ensure accuracy, understandable language and the right tone. #EULAR2026
At “AI vs The Doctor: (When) will AI replace the rheumatologist”, Gerd R. Burmester focused on hallucinations in LLMs in medicine. LLMs are powerful, but fallible. #LupusGPT is designed to limit this risk through validated sources, low creativity, clear limits and no guessing. #EULAR2026
A very useful checklist for ethical AI in rheumatology: 🔹Bias 🔹Privacy 🔹Transparency 🔹Human oversight 🔹Regulatory compliance 🔹Lifecycle monitoring. These are the principles at the core of #LupusGPT, from validation to clear boundaries. #EULAR2026
“Where does the data go?” A crucial question in clinical AI, and one that sits at the heart of responsible patient-facing tools. #LupusGPT was designed with privacy-conscious access, no login, clear safeguards and a validated document library. Safety is also architecture. #EULAR2026
“Can AI say I don’t know?” This is exactly why #LupusGPT was designed with clear boundaries: when the answer is not in its validated library, it does not guess. In patient information, safety is not only about answering. It is also about knowing when to say “I can’t answer”. #EULAR2026
Thank you to Johannes Knitza for mentioning #LupusGPT as a precedent in the validation of AI tools in rheumatology. High acceptance is important, but validation is what makes these tools credible, safer and useful for real-world patient information. #EULAR2026
