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🤩 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
Our Swiss Knife Survey found that fatigue affected 84.9% of respondents and was reported as the symptom least taken into account in treatment plans.
Read the study:
#EULAR2026
Excellent Abstract sessions on Diagnostic Tools in Lupus 🦋
#EULAR2026 #lupus @LupusEurope
This is exactly the gap highlighted in the recent publication by Dr @gomezg_alvaro and our General Secretary, Zoe Karakikla-Mitsakou.
In 55.3% of visits, patient and physician assessments were discordant. Even in DORIS remission, over 1/3 of patients still rated their disease as
⭐ Highlights from the #EULAR2026 PARE Sessions
“The rheumatologist sees remission. The patient still sees disease.”
Perhaps the future of personalised medicine starts by closing that gap.
“AI is an assistant, not an authority.”
Great takeaway from Gerd R. Burmester in “AI vs The Doctor: (When) will AI replace the rheumatologist”.
#LupusGPT follows this principle: patient information, validated sources, clear limits and no clinical decision-making.
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
✅ Low temperature
✅ Guardrails
For #LupusGPT, we also added validation by doctors and patients to ensure
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.
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.
🦋 EULAR started yesterday!
This year, #EULAR2026 brings together a huge rheumatology community:
📊 5,705 abstracts submitted from 102 countries, a new EULAR record
📊 187 scientific sessions across 15 tracks
📊 More than 350 distinguished speakers from 43 nations
And Lupus Europe is here!
As promised, some of our PAN members are covering lupus-related sessions to bring key messages back to the lupus community.
🧑🤝🧑 One of yesterday’s highlights was seeing Marina Pietri present our poster on Sex & Lupus co-creation, with Rita Vieira also there representing the Youth Group’s work. The poster shows how young people with lupus worked with a clinician to create a safe, respectful space to talk about sex, intimacy and lupus, topics that are still too often left out of routine care.
A big thank you to Dr Cristiana Sieiro Santos for her support and collaboration in making this work possible.
🎥 If you haven’t watched the webinar yet, visit our YouTube channel and watch it there.
🧠 We also followed a session on fatigue, one of the symptoms people with lupus most often report as difficult to explain, measure and manage. The session looked at when tiredness becomes pathological, how fatigue can be assessed, and why lifestyle advice needs to be realistic and adapted to each person.
💬 Patient-doctor communication was another key topic yesterday. Have you heard about the Lupus Consultation Cards? Inspired by the work of NVLE in collaboration with ERN ReCONNET, they are a simple tool to help people prepare for appointments, organise symptoms and questions, and focus the conversation on what matters most. This is the idea behind our #MakeItCount campaign.
🌍 Dr Daniel Guimarães de Oliveira presented a poster on social determinants of health in lupus care, co-authored with our General Secretary Zoe Karakikla Mitsakou. This work shows how healthcare professionals, Patient Research Partners from Lupus Europe, local patient volunteers and social workers co-designed a practical framework to identify barriers such as financial pressure, health literacy, transport, social support and access to care, and connect them with local solutions.
📱 Digital tools were also part of yesterday’s programme, with discussions on how technology can support self-management, shared decision-making and patient empowerment. For Lupus Europe, this strongly connects with our work on reliable, patient-centred digital information, including #LupusGPT and #EasyLupus.
🔬 We also followed the session “The mitochondria: a new culprit for autoimmune diseases?”. The discussion explored how mitochondrial DNA and RNA may act as danger signals, activating immune pathways such as interferon responses and contributing to inflammation in lupus and other autoimmune diseases.
👏 Kudos to our PAN members and Board members for their great job on this first day of EULAR!
🦋 Stay tuned. Today will be another big day for Lupus Europe at #EULAR2026!
Our Chair, Jeanette Andersen, will speak in the session on non-pharmacological interventions to improve quality of life.
We also have a Meet the EULAR Expert session on “AI as a Partner in Care: Empowering the RMD Community with Information”, focusing on AI tools such as #LupusGPT and #EasyLupus, which will be delivered by Zoe Karakikla Mitsakou.
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☀️ Good morning from beautiful London!
#Eular2026 is here, and so are we‼️
💬 You may already know #lupusgpt. You may have read the paper in The Lancet Rheumatology. You may have tried the tool, shared it with a patient, or recommended it to a colleague.
📊 But there is more. More to do. More lessons learned from two years of building something genuinely patient-led. More to understand about what happens when patients, clinicians, and AI specialists work together from the very first question.
🦋 This week, we will be sharing it all.
#lupusgpt: more than you think. Further than you imagined.
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📅 Tomorrow, the EULAR Congress begins!
🌍 #Eular2026 starts tomorrow, and Lupus Europe will be there!
🦋 We will be representing the patient voice, following the latest research, and sharing key updates with our community throughout the week.
Stay tuned for live updates, session highlights, and much more.
💬 Will you be following the congress? Let us know in the comments!
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🔴 𝐑𝐞𝐦𝐢𝐬𝐬𝐢𝐨𝐧 𝐝𝐨𝐞𝐬𝐧❜𝐭 𝐚𝐥𝐰𝐚𝐲𝐬 𝐟𝐞𝐞𝐥 𝐥𝐢𝐤𝐞 𝐫𝐞𝐦𝐢𝐬𝐬𝐢𝐨𝐧 🔴
This is one of the most important insights from a new editorial just published in Rheumatology.
📋 The editorial responds to a study analysing five years of data from the Amsterdam SLE cohort. The findings are striking:
🔹 In over half of clinical visits, patients rated their disease as more active than their physicians did.
🔹 Even among visits meeting formal remission criteria, more than 1 in 3 patients still reported significant disease burden.
These discrepancies highlight an important gap between how disease activity is measured clinically and how lupus is experienced by patients in daily life
📊 According to LUPUS EUROPE’s Swiss Knife Survey, patients’ definitions of “disease control” often go far beyond normal blood tests. They include 𝗳𝗿𝗲𝗲𝗱𝗼𝗺 𝗳𝗿𝗼𝗺 𝗳𝗹𝗮𝗿𝗲𝘀, 𝘀𝘁𝗮𝗯𝗹𝗲 𝘁𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁, 𝗾𝘂𝗮𝗹𝗶𝘁𝘆 𝗼𝗳 𝗹𝗶𝗳𝗲, and the ability 𝗹𝗶𝘃𝗲 𝗮𝘀 𝗻𝗼𝗿𝗺𝗮𝗹𝗹𝘆 𝗮𝘀 𝗽𝗼𝘀𝘀𝗶𝗯𝗹𝗲.
𝗦𝗵𝗮𝗿𝗲 𝘄𝗶𝘁𝗵 𝘂𝘀 𝘄𝗵𝗮𝘁 𝗿𝗲𝗺𝗶𝘀𝘀𝗶𝗼𝗻 𝗺𝗲𝗮𝗻𝘀 𝗳𝗼𝗿 𝘆𝗼𝘂. Let's make it visible.
The editorial, co-authored by Dr Alvaro Gomez from Karolinska Institutet, and Zoe Karakikla-Mitsakou, LUPUS EUROPE General Secretary, points to several possible ways this might be addressed:
✅ Incorporating patient-reported outcomes into treatment target definitions
✅ Using assessment tools that better integrate patient-reported symptoms
✅ Exploring broader target frameworks that better reflect what meaningful disease control may look like for people living with lupus
This reinforces why people with lupus must be involved from the start in shaping how treatment success is defined, measured, and pursued.
💬 Have you ever been told you are in remission but not felt like it?
Share what remission means for you in the comments. Let’s make it visible.
📖 Read the full editorial: doi.org/10.1093/rheumatology/keag259
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