This past weekend the six members of the Lupus Europe Board of Trustees plus Alan Cornet, Amy Somers and Zoe Karakikla-Mitsakou were supposed to meet face-to-face in Leuven, Belgium, but for reasons you can understand, this was not possible.

Thanks to understanding partners, children, roommates and dogs, we were able to have two full days of Zoom meetings.

During these two days, we: discussed the Lupus Europe Convention (you’ll hear more about that very soon): reviewed our (52!) Strategic Plan items: went over and updated our ideas and projects for Communications; made so many plans for meetings and calls regarding research, upcoming scientific events, the PAN and our sponsors; and shared any news that we have had from all of our members.

You probably recognize all the faces except one: Zoe Karakikla-Mitsakou. Zoe, (a Greek woman, living in England, who has a degree in psychology but also first-hand experience with lupus) has accepted to join Lupus Europe as a project manager. This was her first real work meeting with us, and we are so excited to be working with her!

The board members are still connecting with the country members to check up on how everyone is doing in these COVID times. So, don’t be surprised if you get an email from one of use asking to chat. We appreciated getting a live update on what is happening with Lupus Poland from Klaudia Kępa during our meeting.

This year Kirsi will be stepping down as Lupus Europe Trustee (but we are counting on her to remain involved with Lupus Europe as an experienced PAN member – we’re not letting her go just yet!). However, this means we are looking for members who are interested in taking their lupus work to a more international level: either as a trustee, or perhaps easier to start off, as a co-opt.
Contact any of the board members to ask about what either of those positions involve, and definitely ask what it’s like to work with all of us, it’s a good group!

Save the date! October 5th at 20:00 to 21:00 Paris time.

The Lupus Europe board will hold a webinar to update you on all these items. We look forward to seeing you all online!
Lupus Europe Board of Trustees

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🎥 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
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📣Don’t forget!

✅ #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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🤩 #EULAR2026 has
LUPUS EUROPE Uniting people with Lupus throughout Europe
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