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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🇨🇭 Spotlight on Lupus Switzerland!

At our #lupusconvention, Lupus Switzerland presented a powerful poster showing the cover of their latest magazine, highlighting their commitment to diversity and inclusion within the lupus community.

🧑‍🤝‍🧑 Although around 9% of their members are men, this was the first time in more than ten years and 22 issues that the topic had been addressed. A meaningful step towards ensuring everyone feels seen and represented.

🖨️ With more than 600 copies printed and distributed, this initiative helps raise awareness, challenge assumptions and promote inclusion across their community.

👏 Congratulations to Lupus Switzerland!
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🚨 Have you ever felt that your symptoms or treatment needs were taken less seriously because of your body size?

😪 For many patients, discussions about symptoms, pain, or treatment options are overshadowed by weight. Medication side effects, inflammation, fatigue, and reduced mobility are often ignored, while responsibility is placed on the individual. This can have real consequences for clinical decisions, referrals, and quality of care.

🌈 We are extremely proud of our Chair, Jeanette Andersen, for addressing this reality in her article “More Than a Number: Weight Bias in Rheumatology Care”, published in the special #EMEUNEWS issue on #Obesity and #RheumaticDiseases.

Thank you, Anastasia Madenidou and EMEUNET, for giving space to this important perspective and for inviting Jeanette to contribute.

Read the full article here: emeunews.org/2025/12/10/more-than-a-number-weight-bias-in-rheumatology-care/
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📌 Reminder for our Youth Group Webinar!

🚫 Alcohol, recreational drugs & lupus: what are the risks?
🌟 What young people living with lupus need to know to protect their health.

Lupus Europe’s Youth Group invites you to an open, evidence-based discussion with Dr Luca Moroni focused on how alcohol and recreational substances can interact with lupus, treatments, and long-term health.

We will talk clearly about:

🚨 Known risks and current uncertainties
🚨 Interactions with lupus treatments
🚨 Real-life situations often left out of the conversation

😱 Why talk about this?

Because young people sometimes make choices that can carry real health risks, and they don’t always feel able to tell their loved ones or doctors everything.

‼️ Alcohol and recreational substances are part of many social environments. When lupus is involved, lack of reliable information can increase risks.

💁‍♀️ Talking about this before helps:

•⁠ ⁠Reduce avoidable risks.
•⁠ ⁠Encourage safe and informed decisions.
•⁠ ⁠Create a safe space for questions that are often left unasked.

🌈 That’s why this webinar exists: to anticipate real situations, NOT encourage them, and provide clear, evidence-based information for young people living with lupus.

🗓 29 January 2026
⏰ 19:00 CET
💻 Online

📩 Register now by emailing secretariat@lupus-europe.org

⏳ There’s still time to join!
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🇳🇴 Spotlight on Lupus Norway!

At our #LupusConvention, Lupus Norway shared how they continue to support people living with lupus through information, education and strong collaboration with healthcare professionals.

🏥 Every year, the University Hospital in Oslo organises a meeting for patients with connective tissue diseases, including lupus. Lupus Norwa has an information stand that offers reliable resources and answers questions from anyone interested in SLE.

📘 They have also published two new brochures to help patients better understand and manage life with lupus.:
“Practical tips for improving your daily life” and “Find out more about SLE”.

📰 To keep their community informed, Lupus Norway publishes a newsletter twice a year, focusing on key lupus-related topics such as research projects, sun protection, and patient stories. They also share updates about their participation in conferences and meetings, including EULAR, helping members stay up to date and engaged.

👏 Congratulations, and thank you, Lupus Norway, for your commitment. You are a great example of how patient organisations can make a difference
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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