Zoe Karakikla-MitsakouLupus Europe Youth Group Meet Up Lupus Europe is organising a Meet Up of the Lupus Europe Youth Group! This event will take place from October 20 to October 22, in Leuven (Belgium). There are a few remaining spots available for new members to join: Do you have lupus? Do you live in geographical Europe? […]
Zoe Karakikla-MitsakouSandra Schaftner volunteers for the German Lupus Group, Lupus Erythematodes Selbsthilfegemeinschaft e.V.. She is also one of the German-version translation volunteers of Lupus100. Lupus100.org is a MULTILINGUAL website run by Lupus Europe that contains clear answers to 100 questions about lupus. Lupus experts and patients have worked collaboratively on the website. Lupus100.org has also been […]
Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Ram Blass from Inbar who talked to us about the wonderful work the […]
Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Marga Schut and Wendy Zacouris from NVLE who talked to us about the […]
Alain CornetLUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire […]
Alain CornetToday is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals. Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from […]
Alain CornetWe at LUPUS EUROPE wish you all a great World Lupus Day, full of hope and awareness! For this we have created a little animated video about LUPUS EUROPE. Please feel free to share! [wpvideo ILoguQxs] We would also like to repost a video made a couple of years ago about the importance of World […]
Alain CornetLUPUS EUROPE BECOMES FIRST ASSOCIATE MEMBER OF SLEuro, the European Lupus Society We are very proud to announce that LUPUS EUROPE has just become the first Associate member of SLEuro, the European Lupus Society. SLEuro is a voluntary and non-political association with social and philanthropic purposes that promotes scientific research and information with regard to […]
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 […]
✅ One more week before the end of the validation phase of the #LBFSS #brainfog score for #Lupus. If you have #SLE and have not participated yet we definitely need your help ⬇️ 15 minutes only to help us improve the recognition of #cognitive manifestations 🧠
🇨🇭 Spotlight on Lupus Switzerland!
At our #LupusConvention, Lupus Switzerland showcased their latest magazine dedicated to men living with lupus.
👏 With 600+ copies printed, this initiative helps challenge assumptions and ensure every voice is represented.
Congratulations!
✅ After MANY HOURS of work on my freetime, I am happy to share that #COGNILUP, the online free platform to test #cognition in #Lupus is going in the right direction 👍 More about it at @SLEUROSOCIETY meeting in Lisbon!
Pre-registrations for the 8th SLEuro Advanced Workshop on SLE are already open!
📍 Stockholm, Sweden 🇸🇪
🗓️ 8-9 May 2026
⏰ Deadline: 8th March 2026
Pre-register here: https://services.aimgroup.eu/ASPClient/home2.asp?eventoid=5512&TypeIN=N
Discover the Preliminary Programme and more: https://sleuro.org/advanced-workshop-on-sle/
🌟 Amazing article by our Chair, @Jeanette_Lupus, on how weight bias affects symptoms, treatment decisions & access to care in rheumatology.
🙏 Thank you @AV_Madenidou & @EMEUNET for the special #EMEUNEWS issue on #Obesity & #RheumaticDiseases.
https://emeunews.org/2025/12/10/more-than-a-number-weight-bias-in-rheumatology-care/
✅ With #SLAKE, we can detect important differences in the level of essential #Lupus knowledge of #SLE participants across world regions, as a way to better focus our efforts
SLAKE: https://doi.org/10.1093/rheumatology/keaf649
🚨Alcohol, recreational drugs & lupus: what are the risks?
Young people face real-life decisions that can affect their health. This Youth Group webinar offers clear, evidence-based information to help support safer, informed decisions.
Email secretariat@lupus-europe.org to join
🎓 New interactive learning module from EULAR Congress 2025 meets Education now available!
"What is New: Systemic Lupus Erythematosus" with Dr. Antonis Fanouriakis covers diagnostic advances, treatment optimisation & new therapeutic classes.
More here: https://pulse.ly/x0u90v9r8s
🇨🇭 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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