‼️ Men with lupus face unique challenges that deserve attention. Andreas Panteli presents a poster on Men and Lupus, highlighting the importance of recognising their specific needs and experiences. 👀 Stay tuned for our upcoming Patient Panel for Men! #LupusConvention

💜 We are so proud of our members!  This Poster Tour at our #LupusConvention shows the creativity, commitment & synergies of our national member groups. 🦋 From running events to patient education projects, this session is proof of the incredible potential of patient advocates!

🖼️ The Poster Tour begins at our #LupusConvention!  💜 Our members showcase their projects, sharing ideas and experiences from across Europe — and our Youth Group presents a thought-provoking poster on Sex & Lupus

🚨 We all have biases. 🌟 At #LupusConvention, Andreas Panteli from Lupus Suisse invites us to recognise them — and to step beyond them, so we can better understand, represent and support the lupus community. 🌈 What an amazing session!

💁‍♀️ Our Chair Jeanette Andersen leads the HTA Summit Introduction at #LupusConvention 2025! ✅ A perfect occasion for our delegates to explore how HTA can strengthen patient advocacy. We hope many will join us at the upcoming HTA Summit! 💜

💜 It’s time for the parallel workshops at our #LupusConvention 2025! 🗣️Delegates are working in groups to share ideas, experiences and solutions around this year’s theme: Every Voice Matters. Such an enriching moment of exchange and learning from each other!

😃 Dr @go-daniel.bsky.social explores now how social determinants of health —income, education, geography, health literacy & stigma—shape lupus outcomes from diagnosis to long-term care. Based on our joint review, co-authored by patients & clinicians https://t.co/OXq9YGUddD #LupusConvention

🩺Important message from Dr Maarten Limper: “New is not necessarily better.” With new options like CAR-T emerging, it’s key to remember that old doesn’t mean outdated or worse: established treatments bring years of experience & safety data. The more, the better! #LupusConvention

🤩 Dr Maarten Limper takes the stage at our #LupusConvention! ✅ From new #EULAR, ACR & KDIGO lupus nephritis guidelines to advances like anifrolumab & CAR-T, he shows how far science has come — & the key role of European Reference Networks in connecting expertise across borders

💜 It’s official — our #LupusConvention 2025 is now open! Our Chair Jeanette Andersen kicked things off with an inspiring message under this year’s theme: “Every Voice Matters.” ✨ We’re thrilled to see so many delegates from across Europe joining us in person!

🎉It’s here! Our #LupusConvention starts today - The theme: Every Voice Matters.  💜Workshops, talks & sessions on every aspect of this theme with delegates from across Europe. Let's move closer to a fulfilling life for all people with lupus, until we reach a world without lupus

🍂Welcome, October! This month, #1month1study focuses on social determinants of health (SDH)- factors like income, education & access to care that can shape the entire lupus journey. 📢 We’re kicking off with our latest review in Autoim Reviews: https://t.co/OXq9YGUddD 🧵👇

🦋 We can say it louder, we can say it clearer… &, with #Lupus100, also in 19 languages! ❌ Lupus is NOT contagious. ✨ Help break the myth: -Share a post on social media -Use lupus100.org to find the explanation in your language and share -links in this thread! ⤵️

🔴 People with #lupus are twice as likely to develop cardiovascular disease as healthy people. 👀 Learn more about CV risk management in RMDs with the @eular.org#lupusrecommendations ➡️ ➡️ https://ard.bmj.com/content/81/6/768 #WorldHeartDay

✔️Connect with other men living with lupus ✔️Share experiences ✔️Contribute to shaping the conversation on male lupus experiences Reasonable travel expenses & accommodation covered. 🟣ONE spot left! Esclusively for men with lupus who live in Europe ℹ️ www.lupus-europe.org/lupus-europe...

🦋Kudos to our Vice-Chair & Secretary, Annemarie Sluijmers, who joined the #GlobalSkin-Europe Health Policy Influencers Forum to share the impact of #LupusGPT & #Lupus100 in improving validated #lupus info for better care. Thank you, GlobalSkin, for ensuring the lupus patient voice is heard!

🚨 Misconceptions can appear anywhere. 🤝 Turning to patient orgs & resources like #Lupus100 & #LupusGPT helps avoid misconceptions that can cause harm & ⬇️ QoL of people with lupus. Share this post & encourage others to visit https://lupus100.org/ & https://lupusgpt.org/

🌈Our Vice-Chair & Secretary is at the #EADVCongress representing lupus patients! 🦋Lupus can affect the skin: our Swiss Knife Survey found 60.4% report sun sensitivity, 50.4% dryness, 48.7% hair loss & 42.6% rashes https://www.sciencedirect.com/science/article/pii/S1568997225000989 #EADV2025

😱 1.3 million times. That’s how often people have visited #Lupus100! Too often looking for an answer to the question: “Is lupus contagious?” 🦋 The answer is clear: NO.  Lupus is 𝗻𝗼𝘁 contagious. It is an autoimmune disease, not an infectious one.  https://lupus100.org/

📅Save the date! @eurordis.bsky.social Patient Partnership Webinar – The #Lupus100 Project 🗓️18 Sept | 18:00 CET With Prof Eric Hachulla, our Chair Jeanette Andersen, our General Secretary Zoe Karakikla-Mitsakou, & Alain Cornet (our Organisation Coach). Register now! us02web.zoom.us/meeting/regi...

🚨Only a few days left to apply for Lupus Europe’s Patient Panel for Men in Leuven🇧🇪(31 Oct–2 Nov 2025). ✅For men living with lupus in Europe ✅Reasonable travel expenses & accommodation covered Apply NOW: [email protected] https://www.lupus-europe.org/lupus-europe-patient-panel-men-2025/

🦋Did you know some people have no idea lupus is NOT contagious? Let's debunk this harmful myth that continues to affect people living with #lupus. ❌Lupus 𝗶𝘀 𝗻𝗼𝘁 contagious! It's an autoimmune disease, not an infectious one. More at lupus100.org #1month1study

🌟Unlike other AI tools, #LupusGPT will 𝗻𝗼𝘁 make up answers. It will let you know if the information is unavailable in its database. ✅Every response is based on a rigorously curated repository of scientific documents, including @eular_org recommendations & #Lupus100 website

📰NEWS ALERT! EULAR has published new core dataset recommendations to standardise the care and research of systemic lupus erythematosus (SLE). 📖Read the full #eularPressRelease here👉https://pulse.ly/ihoshrgzzr #Rheumatology #Lupus #ClinicalResearch

📢The EULAR Edgar Stene Prize 2026 competition call is now open! 🖊️This year's topic is: “Is it all in the genes? How RMDs shape and reshape family connections”. 💫Submit your essay to your national organisation, and share your story. Learn more here: https://pulse.ly/b8qikvceqj

🌈At Lupus Europe, our work goes far beyond what you see on social media.  #1Month1Study will bring to life some of our🔝projects & research. Discover how we work every day towards a fulfilling life for all people with lupus until we have reached a 🌎without lupus. Stay tuned!

📢Presenting an abstract for SLEuro Society #Lupus2026? Submit your interest for the €500 Lupus Europe Poster Award! 📝How to apply? Submit your abstract for #Lupus2026 & indicate your interest in the Lupus Europe Award during submission. Register now www.sleuromeeting.eu/scientific-i...

🚨 Calling all men living with #lupus! 🦋 Lupus Europe is hosting a dedicated event for 𝘆𝗼𝘂‼️ Join us for informative sessions, peer discussions, and a chance to connect with others. ✉️ Send your motivation letter now to [email protected]!

😨 Did you miss our #EULAR2025 debrief webinar? 😮‍💨 Don't worry! You can watch the full session at your convenience. Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our YouTube channel! https://www.youtube.com/watch?v=bGy1H9OA-h0

💡 #Lupus100, developed by ERN ReCONNET & Lupus Europe, is a multilingual free lupus resource. Do you want to know more? Register for this EURORDIS webinar with Prof E Hachulla; our Chair, Jeanette Andersen & Zoe Karakikla-Mitsakou, our General Secretary. www.eurordis.org/improving-pa...

🚀 Hot off the press! @eular.org recs for a core dataset to support clinical care & translational & observational research in #SLE. A new step towards harmonised registries & collaborative research & better care! With 2 of our PAN members as coauthors! www.sciencedirect.com/science/arti...

🤑Win 500€! It's as easy as following these steps when submitting your abstract for the SLE Euro Society Meeting #Lupus2026: Click the link to submit your abstract at www.sleuromeeting.eu/scientific-i... During the submission process, indicate that you would like to run for the Lupus Europe Award

The 2025 #MadeWithPatients Awards offered something rare: a shared pause. A moment to witness the quiet power of patient-led transformation. 🎥 Watch the full ceremony. Link in comments. Follow this space as we share lessons that will guide the next steps. #PatientEngagement#HealthcarethatListens

🦋Help advance research! PainLab from @queensu is conducting a study on pain mapping & psychosocial predictors of depressive symptoms in lupus. Your participation will help researchers better understand the links between pain, mood & beliefs in lupus.

📹Check out this video to see #LupusGPT in action! 💁‍♀️While the interface might appear in English, you can type your questions in your preferred language. LupusGPT is designed to understand & respond in the same language you use, making it truly accessible to everyone, everywhere

✅ #LupusGPT has been developed by Lupus Europe & validated by leading lupus experts & patients. This AI tool ensures 100% reliability by exclusively using information meticulously verified and sourced from top-tier scientific publications and #Lupus100. https://f.mtr.cool/kscmvkgxhf

🛠️Scheduled maintenance alert Today, between 12:00 and 18:00 CET, we will be carrying out maintenance work on both our main website & #Lupus100 website. 🌐 During this time, you may experience limited access or temporary disruptions. Thank you for your support & understanding!

🦋 Living with #lupus can be tricky, especially when searching for high-quality, reliable information. 😵‍💫 Feeling overwhelmed? Discover #LupusGPT! Our AI tool offers a world of doctor/patient-validated knowledge. 🤩Available in most languages! Visit https://f.mtr.cool/xnlsgbevmi now

Are factors like fatigue, depression or pain preventing you from pursuing your fitness goals? We have🔝news! Join our free tailored exercise program, designed to accommodate those with mobility limitations https://buff.ly/45SQAMr Try it this Summer! Let's #KickLupus together!

☀️Welcome, August! This month, #KickLupus focuses on social determinants of health (SDH)- factors like income, education, access to care and even geographic location can shape the entire lupus journey. 📢 We’re kicking off with our latest review in Autoimmunity Reviews: https://t.co/OXq9YGUddD 🧵👇

☀️Have questions about lupus & UV light? Visit #Lupus100! A reliable source of information, created by patients & lupus experts, that answers the 100 🔝common questions about lupus. Available in 19 languages! 👍Stay informed. Stay protected. #KickLupus https://lupus100.org/

😎MYTH: “I’m not photosensitive because I’ve been in the sun & I’m fine.” 🚨 UV sensitivity doesn’t always cause an immediate reaction. Symptoms like rashes, joint pain, or fatigue can appear hours, days, or even weeks later—and in some cases, may trigger a flare. #KickLupus

📢 New in Aut Rev! Together with @go-daniel.bsky.social & Laurent Arnaud, we have reviewed 10 years of studies on SDH in #SLE. This narrative review maps disparities across the patient pathway and offers solutions at each step. From first symptoms to outcomes www.sciencedirect.com/science/arti...

📢Join the QoC Committee Webinar: "How to manage rheumatic diseases during conception, pregnancy and lactation". 💻Tuesday 30 September 2025, 17:00 - 18:00 CEST Register here: https://pulse.ly/lnjpyt27fe #EULAR #Rheumatology #eularEDUCATION #QoC

Thanks @bellamehta.bsky.social & @rheumnow.bsky.social for highlighting #LupusGPT, the first AI tool answering lupus questions with evidence‑based science in almost any language! If you haven't done it yet, give it a try & let us know what you think! lupusgpt.org www.youtube.com/watch?v=lYGY...

🔦 UV light doesn't only come from the sun. It can also come from Fluorescent/halogen lights Some phototherapy lamps Nail curing lamps Some medical equipment (dental or dermatology devices) More ℹ️ in @lupusuk.bsky.social Guide to Artificial Lighting: lupusuk.org.uk/a-guide-to-a... #KickLupus

🌞 MYTH #1: “Sunscreen on your face is enough.” ❌ False. With #lupus, UV protection must cover all exposed skin. Not just your face. ‼️Remember! UV rays can penetrate certain types of fabric. Don’t forget to reapply every 2 hours, after sweating or getting wet. #KickLupus

🏖️ This week, we’re debunking common myths about UV exposure & #lupus. 💬 Did your doctor ever explain how UV light can affect lupus, and how to protect yourself? 💬 What do you wish doctors had told you about UV exposure and lupus but didn’t? Let’s #KickLupus!

Thank you for disseminating SLAKE, @resobordeaux.bsky.social! Don't wait and find out what you really know about #lupus! maladie-autoimmune.fr/SLAKE/

😨 Did you miss our #EULAR2025 debrief webinar? 😮‍💨 Don't worry! You can watch the full session at your convenience. Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page! www.facebook.com/LupusEurope/...