🌟We were at the @eular.org #PARE Conference 2025!  😃 Proud to have our Chair, Jeanette Andersen, representing the European #lupus community.  Being present in this important event helps us amplify the patient voice, shape future research, strengthen the PRP network & much more!

🌟 New milestone! Lupus Europe has been invited to the HMA/ @ema.europa.eu Multi-Stakeholder Workshop on AI. 🎤 #LupusGPT, a patient-driven tool, is recognised alongside major regulatory and industry innovations. 👀 Don't miss the event! Watch it at www.ema.europa.eu/en/events/hm...

🌈 Exciting news! 🎙️ We’ve launched Lupus Europe: The Podcast! A new project and a new step forward to bring our studies, projects and research to all audiences, making science clear, accessible and truly patient-friendly. 🎧 First episode is live. Listen now! open.spotify.com/show/3yMLxGT...

🇮🇹 Spotlight on Gruppo Italiano LES! 🌸At our #LupusConvention, our Italian member organisation showcased inspiring initiatives to improve lupus care & awareness. From monthly live broadcasts with lupus experts to supporting clinics & campaigns like Your Voice Matters & SLE is More

🇮🇸 Spotlight on Lupus Iceland! At our #LupusConvention, Lupus Iceland's poster showed why patient orgs are essential: they identify unmet needs & work towards practical solutions. Did you know they import sun protection products, like hats & sunscreen, not sold in Iceland? 😍

🇧🇪 Spotlight on Lupus Belgium! At our #LupusConvention, ASBL Lupus Erythematosus Association showcased inspiring initiatives empowering people living with lupus. From yoga & therapeutic workshops to their magazine Le Lien & new website! 👏 Congratulations for your amazing work!

🦋 #Lupus is a rare autoimmune disease that can potentially impact every aspect of life, From daily activities and social interactions to work and access to support. ✍️ Participate in the #RareBarometer survey by EURORDIS & make your voice heard 🔗 www.sphinxonline.com/surveyserver...

🧵 THREAD 📢 Our latest study, co-led by Dr @go-daniel.bsky.social & Zoe Karakikla-Mitsakou, takes a comprehensive look at how SDH shape every stage of the patient pathway. 💎 It also proposes practical solutions to improve health equity & outcomes. t.co/OXq9YGUddD #1month1study

At our #LupusConvention, our Czech member organisation impressed us with an inspiring poster showcasing their wide range of initiatives for people with lupus. From psychological support to exercise, they cover it all! Congratulations, & keep it up!

✅ Do you want to know more about topics like fatigue or CAR-T cells? 🎥 Find them all on our website! 🌟 Expert talks, patient perspectives, research updates, event highlights... Our video section has it all so you can watch it anytime! https://www.lupus-europe.org/videos-on-demand/

🚨Attention lupus researchers! Last chance to register for the €500 Lupus Europe Poster Award at #Lupus2026! Registration closes on the 20th Oct! During the submission process, you will be asked to indicate whether you would like to run for the award.

✅ Great news! 🙌 New @eular.org 2025 recommendations for the management of SLE with kidney Involvement have just been published in @ard.eular.org. Congrats to all authors for this amazing work! https://ard.eular.org/article/S0003-4967(25)04412-7/fulltext

🦋 What’s the purpose behind Lupus Europe attending scientific meetings? 🌈 It’s about staying informed & informing the lupus community, building projects & more. We tell you all about it out here!👇 www.facebook.com/LupusEurope/... www.instagram.com/p/DP1tilwjYxG/ www.linkedin.com/posts/lupus-...

🚨Due to exceptional circumstances, 2 spots have become available! If you’re a man living with lupus in Europe, don’t miss this chance to join this unique initiative! ✈️Reasonable travel expenses & accommodation covered. 📩Just email [email protected] & let us know!

💜 What an inspiring poster by Andri, from CYLPER, at the #LupusConvention!  🗣️ “My Voice Has Space” creates a safe environment for people with lupus to share their experiences freely. 💡 “My Voice Becomes Action” turns those voices into creation, connection & mobilisation.

🚨Today is #WorldMentalHealthDay. ☝️Do you know that #lupus patients are at high risk of anxiety and #depression? Always talk to your physician about how you feel. Addressing mental health problems promptly is key. 🦋 Know more. Visit #LupusGPT https://lupusgpt.org/

📍 We’re in the 6th #3TR Meeting! 😄 At Lupus Europe, we’re proud to have four patient representatives in the Patient Advisory Committee, making sure that the voices & experiences of people living with lupus are included. Thank you for involving patients in research!

💬 The message can be good, but it gets lost if communication isn’t clear or focused. ✨ Our Organisation Coach, Alain Cornet, delivers the last session of our #LupusConvention to show how message tracks help keep our communication focused, collaborative and impactful

Factors like diagnosis delay, organ damage, age, disease activity, flares & socioeconomic status can have an impact on direct costs of lupus. Economic evaluation should include direct, indirect & intangible costs, according to Giuseppe Turchetti from ERN ReCONNET  #LupusConvention

💜Last day of our #LupusConvention! Giuseppe Turchetti from ERN ReCONNET joins us to discuss the ongoing collaboration with Lupus Europe to build a more structured, coordinated, patient-centred approach to lupus care, & a joint project on the economic cost of lupus. 😃Stay tuned!

🦋 Dr @go-daniel.bsky.social has just finished an amazing Meet the Doctor session full of great questions and discussions! 💜 A huge thank you to Dr Daniel Guimarães de Oliveira for his outstanding support and full dedication throughout our #LupusConvention. You went the extra mile!

🌳 Yesterday, our tree showed Lupus Europe’s achievements. 🌈 Today, our members added theirs — and it’s now full of life. ✨ What a beautiful symbol of everything we can achieve together as one strong, connected lupus community across Europe! #LupusConvention

💜 In a #LupusConvention themed “Every Voice Matters,” our Youth Group couldn’t be missing! 🙌 During their session, they shared key challenges that call for a youth-specific space and showed how young voices can bring fresh perspectives and drive change into lupus care

‼️ 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...