Webinar: CAR-T Cell Therapy in Lupus — Promises and Challenges Explored

Join us for an insightful webinar on Tuesday, December 5th at 19:00 CET, as we present a balanced examination of CAR-T cell therapy in the context of lupus. We are honoured to host Professor Ed Vital, who will share his expertise on both the possible opportunities and challenges of this innovative treatment. In this webinar, […]

Unmasking the Link: Smoking, Lupus Development, and Cardiovascular Risk

Sandra Schaftner volunteers for the German Lupus Group, Lupus Erythematodes Selbsthilfegemeinschaft e.V. She is also one of the German-version translation volunteers of Lupus100. Below is a piece Sandra wrote on smoking and lupus. According to a study presented at the EULAR Congress 2023, smokers have a doubled risk of developing lupus. The study also emphasised […]

Lupus Europe at the Lupus Academy’s 12th Annual Meeting: Highlighting Patient Perspectives

Lupus Europe at the Lupus Academy’s 12th Annual Meeting: Highlighting Patient Perspectives   The Lupus Academy is a long-term initiative committed to improving patient outcomes in systemic lupus erythematosus (SLE). The Lupus Academy provides a highly interactive educational forum and brings together experts from around the world to discuss the latest advances in SLE.   […]

Lupus Europe Convention 2023 – Convention Report

The Lupus Europe Annual Convention 2023 took place in Lisbon from April 28 to May 1, 2023. The theme of this year’s Annual Convention was “Volunteering”.   Lupus organisations in Europe are patient-led and volunteer based; volunteers are the life force of our organisations. Being a volunteer can be incredibly rewarding, can enhance skills and […]

GlobalSkin ELEVATE Conference Update

We are thrilled to share some exciting news from the recent GlobalSkin ELEVATE Conference in Brussels, where Annemarie Sluijmers, Vice Chair and Secretary of Lupus Europe, was honoured with the prestigious GlobalSkin Patient Leaders Award. The conference, held from June 1 to 4, brought together experts, researchers, and patient advocates from the field of dermatology […]

EULAR 2023

  The European Alliance of Associations for Rheumatology (EULAR) Congress 2023 was incredibly interesting, full of groundbreaking research and information about lupus! EULAR 2023 was also very successful for Lupus Europe and its Patient Advisory Network (PAN) members. With unwavering dedication and hard work, PAN members showed their commitment to supporting the lupus community across […]

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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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