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 CornetThe non-profit organisation ClAIR which groups lupus, arthritis and scleroderma associations (among them our French-speaking Belgian member) is organising a virtual congress from tomorrow, 30th March 2018, to 13th April included. LUPUS EUROPE will have a virtual stand in the congress. For more information, please see the press release: virtual congress CLAIR The congress is […]
Alain Cornet690 people participated in the European Lupus Meeting in Düsseldorf last week (March 21-24). This was 50% increase in comparison to the last ELM in Venice in 2016, which indicates a rising interest in this disease. Most of the participants were lupologists from all across Europe and there were even some from Australia, North- and […]
Alain CornetWe still have 3-5 available positions at our Lupus Europe youth panel in May. If you meet the criteria below and fit the geographical spread you could come into consideration. Are you interested in improving conditions for young people with lupus in Europe? Do you have something to say and want to be heard? Are […]
Alain CornetLUPUS EUROPE was present once again at this year’s PARE conference, which was held from 16th-18th February in Brussels. PARE provides an opportunity to meet with other patient organisations who are members of the PARE network, to hear the latest updates on some of the programmes, to influence PARE’s priorities for the next year, and […]
Alain CornetLUPUS EUROPE is the organisation that brings 26 national lupus groups from all over Europe together. To better include all countries in its activities and work, it is opening up a number of interesting volunteering opportunities for members of our national groups. There is no need to be a Lupus Expert, all that is […]
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 CornetAn ERN (European Reference Network) ReCONNET Survey on awareness and knowledge of Clinical Practice Guidelines in rare and complex connective tissue disorders will be open until 10th February 2018. These surveys provide vital information to the doctors and researchers setting guidelines for our care. This survey can be filled in by patients or their families […]
✅ 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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