Alain CornetThe non-profit organisation ClAIR which groups lupus, arthritis and scleroderma associations (among them our French-speaking Belgian member) is organising a virtual congress from tomorrow, 30th March 2018, to 13th April included. LUPUS EUROPE will have a virtual stand in the congress. For more information, please see the press release: virtual congress CLAIR The congress is […]
Alain Cornet690 people participated in the European Lupus Meeting in Düsseldorf last week (March 21-24). This was 50% increase in comparison to the last ELM in Venice in 2016, which indicates a rising interest in this disease. Most of the participants were lupologists from all across Europe and there were even some from Australia, North- and […]
Alain CornetWe still have 3-5 available positions at our Lupus Europe youth panel in May. If you meet the criteria below and fit the geographical spread you could come into consideration. Are you interested in improving conditions for young people with lupus in Europe? Do you have something to say and want to be heard? Are […]
Alain CornetOn December 6th Katharine Wheeler participated in the closing conference for EPF’s campaign on Access to Healthcare for All. At the conference EPF presented their Roadmap for Universal Health Coverage for all. Katharine was invited to speak as a patient organisation representative and stressed the importance of leaving no-one behind if we want to achieve […]
Alain CornetThe LUPUS EUROPE annual convention has just come to a close. Hosted in Milan by Lupus Italy on the occasion of their 30thanniversary, the convention was an inspiring event centred around the theme of “pain, fatigue and stress”, with Dr Chiara Tani as a key note speaker. Benefitting from the Italian Lupus Clinic experience, we […]
Alain CornetJoin your peers as they pave the developmental exchange of research and best practice in rheumatology! Submit your abstract to #EULAR2018: http://congress2018.eular.org/abstract_submission.cfm
Alain CornetIt’s #WorldArthritisDay! Check out EULAR´s #DontDelay #ConnectTodaycampaign video featuring Kate, Aran and Simon. Together, we can raise awareness about the importance of early diagnosis and treatment of rheumatic and musculoskeletal diseases. #WAD #WAD2017 You can watch the video here: http://bit.ly/2yHnbZU
Alain CornetTuesday, October 3rd Chair Kirsten Lerstrøm, LUPUS EUROPE, has been invited to address the TOPRA Annual Human Medicines Symposium; Collaboration – Strategies – Solutions – Global regulatory approaches to improve healthcare. She has been invited to present on How to reflect the needs of patients in drug development programmes in the session “Involving patients in […]
Alain CornetMonday, September 25th Chair Kirsten Lerstrøm, LUPUS EUROPE, has been invited to address the European Parliament ENVI Committee on “The case of lupus: Prevention and Treatment of Autoimmune Diseases” at the workshop in Parliament on “Autoimmune Diseases – modern diseases”. _______________ Message is that lupus is complex and complicated both to manage and to live […]
Alain CornetMay 10th is World Lupus Day What is lupus? Lupus is a chronic autoimmune disease that causes the immune system to attack the body’s connective tissue and organs. Parts of the body affected can include the joints, kidneys, heart, lungs, brain, blood and skin. Up to 500,000 people in Europe have lupus. 90% of people […]
🎥 Our Chair, @Jeanette_Lupus, 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
🦋What an amazing second day at #EULAR2026!
A 🔝 day for Lupus Europe, with Zoe presenting #LupusGPT & our local patient panel work, and @Jeanette_Lupus 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, 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.
🎥 Last week, during #EULAR2026, the Chair of Lupus Europe's Board of Directors, Jeanette Andersen, was interviewed on EULAR TV about #LupusGPT.
Watch as she explains what #LupusGPT is and why reliable, understandable lupus information is important for patients and for lupus care.
🦋 #LupusGPT is patient-led, built with clinicians, patients and IT experts, and grounded in trusted lupus resources.
#LupusGPT is not a replacement for healthcare professionals, but it helps people better understand lupus information and prepare more informed questions for their physicians.
📺 Watch the full interview on the EULAR YouTube channel:
www.youtube.com/watch?v=plqZt7J142I
Thank you EULAR for giving space to patient-led innovation on EULAR TV!
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📣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
0 CommentsComment on Facebook
✅ #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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