Alain CornetHello again – now a note about day 2 at the IAPO GPC 2016! (International Alliance of Patients Organisations) Global Patients Conference 2016) Sunday morning was devoted to UHC (Universal Health Coverage). We had two presenters, from the WHO (World Health Organisation), Nittita Prasopa-Plaizier and Mario Ottigilo. UHC is a global project with the goals : health […]
Alain CornetThis week the training begins… dedicated to Denmark – click on Run with Andreas for more.
Alain CornetWe have a new page on the LUPUS EUROPE blog, in honour of an inspiring young man who has decided to run with and for LUPUS EUROPE. To follow his story each week simply click on the tab ‘Run with Andreas’. Week 0/24 Greatest life Challenge, till the next one! A few months ago […]
Alain CornetLUPUS EUROPE’s annual convention will be held in Würzburg, Germany this year from 28th September (afternoon welcome and registration) – 02 October 2016 (closing after morning sessions). The German Lupus Association is celebrating their 30th anniversary this year and is looking forward to welcoming us to Germany for the occasion. More information coming soon…
Alain CornetHI! from the IAPO (International Alliance of Patients Organisations) Global Patients Conference 2016! I’m representing Lupus Europe at this amazing conference! From www.iapo.org.uk “150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world.” My objective here was to represent Lupus Europe […]
Alain CornetPatients take universal health coverage into their own hands 150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world. Patients’ groups, academics and health organisations will meet at the 7th Global Patients Congress, from 9-11 April, to share innovative […]
Alain CornetIn one month’s time it’s World Lupus Day. For the occasion the World Lupus Federation (which reunites the Lupus Foundation of America, LUPUS Europe and other Lupus federations around the world) has set up a petition, addressed to the World Health Organisation, requesting that Lupus become a priority, enabling patients to be diagnosed and treated as quickly […]
✅ 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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