LUPUS EUROPE

22/01/2026

🇨🇭 Spotlight on Lupus Switzerland!

At our , 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!

19/01/2026

🚨 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 issue on and .

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

Read the full article here: https://emeunews.org/2025/12/10/more-than-a-number-weight-bias-in-rheumatology-care/

15/01/2026

📌 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!

13/01/2026

🇳🇴 Spotlight on Lupus Norway!

At our , 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

10/01/2026

🛠️ Maintenance alert:

We are carrying out maintenance work on our main website.

🌐 During this time, you may experience limited access or temporary disruptions.

In the meantime, you can visit and for lupus info!

Thank you for your support & understanding!

08/01/2026

🧠 Brain fog in lupus is real, but although it can be assessed using different tools, what we mean by “brain fog” has never been clearly defined in a lupus-specific way.

🙏 Help us and the research team change that.

✅ After a year of work, the Lupus Brain Fog Severity Scale (LBFSS) is now finalised, and we are in the validation phase.

If you live with lupus and experience brain fog, your participation is essential.

⏱️ It only takes a few minutes.

https://lupusresearch.limequery.org/337533?lang=en

07/01/2026

🚨Calling all men with lupus in Europe!

Join other men in this 𝗢𝗡𝗟𝗜𝗡𝗘 𝗘𝗩𝗘𝗡𝗧 organised by men with lupus.

📅 10th January- 𝘁𝗵𝗶𝘀 𝗦𝗮𝘁𝘂𝗿𝗱𝗮𝘆❗
🕙 10am CET
📍Online

E-mail ricky@lupus-europe.org to register

31/12/2025

22/12/2025

✅ New tool for essential lupus knowledge now available!

🧠 (Systemic Lupus Assessment score for Essential Knowledge) has just been officially published in Rheumatology and is now available worldwide.

🦋 SLAKE is a multilingual digital self-assessment tool created to help people living with understand what they already know about their disease and identify areas where they may want to learn more.

💜 We are proud to say that patient involvement was central from the very beginning. Lupus Europe actively contributed to the development, validation and dissemination of SLAKE alongside the scientific team led by Prof. Laurent Arnaud and Dr Antonin Satrin.

Remember! SLAKE is not a test. It’s a tool designed to help you understand which areas of lupus you already know well and where you could learn more. Try it now!

https://maladie-autoimmune.fr/SLAKE/

🌟 And if you want to keep learning, remember to visit and : two reliable resources to improve your lupus knowledge.

16/12/2025

📣 Register now by sending an email to secretariat@lupus-europe.org, and don't miss 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

🖥️ In this online webinar, Lupus Europe’s Youth Group will have an honest, evidence-based discussion with Dr Luca Moroni on how alcohol and recreational substances can interact with lupus, treatments, and long-term health.

The discussion will address risks, uncertainties, and real-life situations that are often overlooked, offering clear information to support open discussions, knowledge, and dialogue.

Save the date!

🗓 29 January 2026
⏰ 19:00 CET
💻 Online