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🦋 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, you can read the full recap here: 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
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.
✅ #EULAR2026 has finished, but we still have a lot to tell you!
🦋 Day 2 at the EULAR Congress showed why patient involvement matters across research, care, digital innovation and outcome measurement.
🥰 Lupus Europe was proud to contribute to several key sessions.
💬 Zoe Karakikla-Mitsakou, our General Secretary, presented #LupusGPT and #EasyLupus in the Meet the EULAR Expert session on AI as a partner in care, highlighting patient-led, reliable and accessible digital information.
🌍 Zoe also spoke in the session “Bridging the Gap: Expanding Rheumatology Access for Underserved and Underrepresented Communities”, sharing insights from local patient panel work in Portugal and how patient organisations can help identify real-world barriers to care, especially for people we do not always reach.
Thank you to Dr Daniel Guimaraes de Oliveira for his contribution and support in this important project.
🧩 Our Chair, Jeanette Andersen, delivered an inspiring presentation on non-pharmacological interventions in connective tissue diseases, bringing the patient perspective into discussions on physical activity, and the need for psychosocial support and personalised care beyond medication.
📊 Another highlight of the day was Jeanette co-chairing, together with Prof Laurent Arnaud, the session on measurement of disease activity in SLE clinical trials. The session explored how we measure lupus arthritis, treatment outcomes and remission, and why outcome measures must better reflect the reality of living with lupus.
💫 Our team also followed key sessions and poster tours on epidemiological data for advocacy, access and empowerment, and therapeutic advances in lupus.
And throughout the day, we continued welcoming visitors at the Lupus Europe booth, sharing our projects, tools and conversations with the wider rheumatology community.
Would you like to hear more from our team?
📅 Join our #EULAR2026 recap webinar on 15 June at 19:00 CET, Paris time.
You will hear key takeaways from our team, plus videos from some speakers explaining their presentations in patient-friendly language.
✅ To register, email secretariat@lupus-europe.org
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🤩 #EULAR2026 has been a blast!
Now it’s time to look back at some of the key lupus-related insights, data and messages from this year’s Congress.
Join Lupus Europe for our EULAR 2026 recap webinar:
📅 June 15
🕖 19:00 CET
📍 Zoom
✅ Register by sending an email to [secretariat@lupus-europe.org](mailto:secretariat@lupus-europe.org)
Don’t miss it!
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🦋 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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