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Lupus Europe

@lupuseurope.bsky.social
123 followers 98 following 535 posts

Lupus Europe is the umbrella association of currently 31 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.

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Lupus Europe @lupuseurope.bsky.social · 12/10/2026
‼️ Too many remain undiagnosed in the EU alone with an #RMD. Raising awareness is key to achieving early diagnoses for all.  Join us and help raise awareness of the existence and impact of rheumatic and musculoskeletal diseases (RMDs). #WorldArthritisDay #WAD2026
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Lupus Europe @lupuseurope.bsky.social · 12/10/2026
🔴 Arthritis is the swelling & tenderness of one or more joints. It’s an illness that comprises many conditions that affect the joints, tissues around the joint, & other connective tissues: #lupus, rheumatoid arthritis & osteoarthritis, to name a few #WorldArthritisDay #WAD2026
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Lupus Europe @lupuseurope.bsky.social · 10/10/2026
🚨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 lupusgpt.org
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Lupus Europe @lupuseurope.bsky.social · 05/10/2026
💃 That’s a wrap on the 2026 Lupus Europe Convention! 🦋 Three days of learning, sharing, practical ideas and plenty of laughter. Thank you to everyone who made Barcelona so special. 🇷🇸 Next stop: Belgrade for the 2027 #LupusConvention!
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Lupus Europe @lupuseurope.bsky.social · 05/10/2026
🔴Where we live, available resources & our ability to access and understand health information can affect lupus care & outcomes. Health literacy is more than “patient education”. #EasyLupus & Consultation Cards help make information easier to understand & use. #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 05/10/2026
💬 Health literacy challenges can build up: too much info, conflicting advice, language barriers, changing doctors & difficulty expressing needs or taking part in shared decisions. Mark Bakker stresses that these needs can also go unnoticed by professionals. #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 04/10/2026
🩺 Meet the Doctor at #LupusConvention gives delegates the chance to bring questions and concerns from their communities directly to a lupus specialist. Today, Prof Cervera is sharing practical knowledge on lupus mechanisms, manifestations & wider issues relevant to daily life
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Lupus Europe @lupuseurope.bsky.social · 04/10/2026
🚀Workshops are a central part of every #LupusConvention.  ✅Together, we listen to the needs and resources of our members' communities, explore what we can control or influence, and define concrete, realistic actions that Lupus Europe and its community can take forward together
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Lupus Europe @lupuseurope.bsky.social · 04/10/2026
🦋 Young people with lupus face challenges that go beyond treatment itself. At #LupusConvention, Rita Vieira from our Youth Group is bringing the youth perspective into focus, from transition to adult care and adherence to side effects, fertility and family planning.
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Lupus Europe @lupuseurope.bsky.social · 04/10/2026
💬 What happens beyond the doctor’s office matters too. 🦋 Andrea from Spain shares @felupus Youth Encounter project: a safe, judgement-free space where young people can talk about treatment fatigue, daily life and support each other. #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 04/10/2026
📖 Jona from Iceland shares the book Maria & Mom’s Secret, a story about 8yo Maria and the special bond she shares with her mum, where everyday moments become imaginative adventures together. ✨ Another example of the creativity and ideas our members bring to #LupusConvention.
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Lupus Europe @lupuseurope.bsky.social · 04/10/2026
💡 Our Chair, @Jeanette_Lupus, is showing how organisations can make practical use of #LupusGPT in their activities, from drafting social media posts and newsletters to developing ideas, adapting content and saving time on routine communication tasks. #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 04/10/2026
Andri from Cyprus shares how they plan to use the Consultation Cards locally: distributing the Greek version, discussing them with groups in different towns and sharing them with rheumatologists. 💬 Practical tools become stronger when we share how we use them. #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 04/10/2026
🗣️ Another practical tool to take home from #LupusConvention! Our Board Member, Francesca Marchiori, presents the Lupus Consultation Cards, available in 20 languages and in female and male versions, to help people prepare for appointments. 💬 f.mtr.cool/w9f3rk35xv
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Lupus Europe @lupuseurope.bsky.social · 04/10/2026
💡 Sharing what works helps avoid duplicating work. At #LupusConvention, our Vice-Chair and Secretary, Annemarie Sluijmers, presents our Exercise Programme: 5 levels, developed with trained physical therapists and endorsed by EULAR. f.mtr.cool/swwq1xn022
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Lupus Europe @lupuseurope.bsky.social · 04/10/2026
🧬 Prof John Isaacs is taking us from the basics of how the immune system works to why B cells matter in autoimmune RMDs, & how different approaches can target them. The aim of precision medicine is to become increasingly selective about which cells we target. #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 04/10/2026
📊 Our Vice-Chair and Secretary, Annemarie Sluijmers, is presenting the results of our Lupus Europe sunscreen survey. 🦋 Across Europe, physician advice is common, but availability, affordability and reimbursement vary. Access to sun protection matters. #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 03/10/2026
🌟 Lupus Europe is an eligible patient organisation of @ema.europa.eu, and a dedicated PAN group contributes to EMA activities. Kaisa Immonen is now helping our members better understand how EMA works, how patients can contribute, and how they can engage more effectively. #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 03/10/2026
🟣 Lupus treatment needs 3 perspectives to meet: clinician, researcher and patient. Alice Barinotti reminds us that the patient is not only the goal of research, but also where many of the most important questions begin. 🔗Connecting all 3 is essential. #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 03/10/2026
🧐Why can lupus research take so long? Researcher Alice Barinotti explains the challenge: lupus is a ⬆️⬆️ complex, heterogeneous disease- moving from a biological mechanism to a treatment can take 10–15 years, with only a few ideas making it through the pipeline. #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 03/10/2026
🎈 After lunch at #LupusConvention, the Lupus Europe Board keeps adding achievements to our balloon, including our upcoming Menopause & Lupus webinar. 📅 13 Oct, 19:00 CEST 👇🏻 f.mtr.cool/2vg5kqjg28
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Lupus Europe @lupuseurope.bsky.social · 03/10/2026
🎈Board Member Francesca Marchiori & PAN member Aldevina Sturiene add our latest achievements to our balloon.  🦋 One we are especially proud of: #LupusGPT published in @thelancetrheum.bsky.social   www.thelancet.com/journals/lanrhe/a… #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 03/10/2026
💁🏻‍♀️Chair of Lupus Europe’s Board, Jeanette Andersen, talks about clinical trials from the perspective of people living with lupus: the questions that arise before taking part, and why patient voice and participation are essential to advancing better treatments. #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 03/10/2026
🏃‍♀️ Time to exercise! Physical activity can support fatigue, strength, function and quality of life in lupus. Our Exercise Programme has 5 levels, developed with trained physical therapists, for different energy levels and abilities. 👉 f.mtr.cool/0lxqrf849o #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 03/10/2026
🔬 Research needs collaboration. Prf Cervera points to 3TR as a major European research initiative in autoimmune diseases, bringing academia, patoents & industry together. Lupus Europe is involved in 3TR, helping bring the patient perspective. #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 03/10/2026
📚A key part of #LupusConvention is bringing new learning & knowledge to our member organisations. 🦋That’s why we invite leading experts such as Prof. Ricard Cervera from @hospitalclinic.bsky.social to share their expertise, answer questions & contribute to meaningful discussion across our community
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Lupus Europe @lupuseurope.bsky.social · 03/10/2026
At #LupusConvention, Felupus, one of our National Member Organisations, is sharing how its network of 21 lupus associations across Spain supports people with lupus through information, training and awareness activities. 💜 A great example of members learning from each other.
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Lupus Europe @lupuseurope.bsky.social · 03/10/2026
🦋 The Lupus Europe Convention officially kicks off! ✨ We’re starting with introductions and a creative clay challenge around this year’s theme, treatment. From treatment burden and sun protection to clinical trials and the importance of a doctor who listens. #LupusConvention
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Lupus Europe @lupuseurope.bsky.social · 29/09/2026
🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs like #lupus. 1️⃣ Always talk to your physician about preventive measures. 2️⃣ Work to minimise risk factors ⤵️ - Don't smoke🚭 - Practise exercise🏃‍♂️ - Have a healthy diet🍏 #WorldHeartDay
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Lupus Europe @lupuseurope.bsky.social · 29/09/2026
🔴 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 recommendations ➡️ ➡️ ard.bmj.com/content/81/6/768 #WorldHeartDay
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Lupus Europe @lupuseurope.bsky.social · 28/09/2026
🇧🇪 In Belgium on 10 October? Our member Lupus Belgium is holding its Annual Association Day in Brussels, with sessions on pregnancy & lupus and patients’ rights. 🦋 Free to attend, but registration is required. 👉 www.lupus.be/event/journe... You can follow them on Facebook!
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Lupus Europe @lupuseurope.bsky.social · 24/09/2026
🔴Calling HCPs & patients! This webinar is for you. How can PROs bring the patient perspective into lupus consultations & potentially support better adherence & outcomes? Join @lupusacademy.bsky.social, Jeanette Andersen, Prof M Dall’Era & Prof R van Vollenhoven. 🔗 us06web.zoom.us/webinar/regi...
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Lupus Europe @lupuseurope.bsky.social · 17/09/2026
🟪 Today is #WorldPatientSafetyDay. 🦋 For people living with non-contagious long-term conditions like #lupus, safety also means timely diagnosis, coordinated care and being heard. We join the World Patients Alliance in calling for #SafeCareForLife
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Lupus Europe @lupuseurope.bsky.social · 14/09/2026
🇷🇸 The first stop for our new initiative: Lupus Europe on Tour! 😃 🦋 Bringing us even closer to member organisations across Europe! Last weekend, Board Member Ricky Chotai visited our Serbian member, Udruženje ORS, in Belgrade. 👏 More visits will follow!
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Lupus Europe @lupuseurope.bsky.social · 04/09/2026
🛑 #Lupus symptoms & treatments can impact sexual life. Although sexual dysfunction is prevalent among RMDs, it remains under-recognised, under-discussed & under-treated in clinical care.  🔊Let's raise awareness about the importance of addressing this issue. #WorldSexualHealthDay
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Reposted by Lupus Europe
Lupus UK @lupusuk.bsky.social · 11/08/2026
Preparing for a specialist appointment? 🩺 @lupuseurope.bsky.social have created FREE Lupus Consultation Cards to help people with #lupus prepare for consultations by identifying symptoms and preparing questions for their #healthcare team. 🔗Learn more: bit.ly/3Sn75yV #LupusPatientSupport
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Lupus Europe @lupuseurope.bsky.social · 12/08/2026
Thank you for sharing!
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Lupus Europe @lupuseurope.bsky.social · 10/08/2026
🌎Access to care shouldn't depend on where you live or what you earn. In this @eular.org PARE podcast, our Chair Jeanette Andersen talks with Luris Higuera- FUNARP @lauraathie.bsky.social- @cetlu.bsky.social Gonzalo Tobar- Lupus Chile about access in Latin America. open.spotify.com/episode/2f8D...
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Lupus Europe @lupuseurope.bsky.social · 05/08/2026
💊 Adherence works best when patients & healthcare professionals work as a team. Patients need a safe space to explain what makes it difficult. HCP need to ask the right questions. Prof Nathalie Costedoat-Chalumeau explains why this conversation matters youtu.be/hNlDFIGck7E
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Lupus Europe @lupuseurope.bsky.social · 01/08/2026
It is, yes! 😃
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Lupus Europe @lupuseurope.bsky.social · 29/07/2026
🧠 “Your experience of brain fog is real. It is common. It deserves attention.” Prof Laurent Arnaud & our Chair, Jeanette Andersen, explain how people living with #lupus helped shape the #LBFSS from the very beginning. 📖 Read the study: lupus.bmj.com/content/13/2/e002148
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Lupus Europe @lupuseurope.bsky.social · 23/07/2026
‼️Today is #WorldSjogrensDay, a chronic autoimmune disease that affects 14-17.8% of #lupus patients. 💁‍♀️ Although Sjögren's is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.
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Lupus Europe @lupuseurope.bsky.social · 20/07/2026
🧠 Brain fog is one of the most challenging symptoms of lupus, yet there was no specific way to measure it... Until now! Hear Prof Laurent Arnaud & our Chair, Jeanette Andersen, explain the new Lupus Brain Fog Severity Scale #LBFSS. Lupus Europe is proud to have contributed to its development
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Lupus Europe @lupuseurope.bsky.social · 15/07/2026
✅ #SLAKE is still open! 🦋How well do you understand #lupus? Try #SLAKE: a 15-minute quiz created by Prof Laurent Arnaud & the SLAKE team with major support from Lupus Europe & ERN ReCONNET. ✔️20 languages ✔️Different questions every time you use it maladie-autoimmune.fr/SLAKE
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Lupus Europe @lupuseurope.bsky.social · 08/07/2026
🟪 Tired of the medical jargon? Need lupus information that is easier to understand? 🔹 Try #EasyLupus: like #LupusGPT, but designed to make answers even simpler. ✅ Free, multilingual and helpful for everyday questions about lupus. easy.lupusgpt.org
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Lupus Europe @lupuseurope.bsky.social · 08/07/2026
☀️ As we close our #LupusUVprotection campaign, remember: reliable information matters. Have questions about UV light, symptoms & #lupus? 🔹 #LupusGPT: free, anonymous AI tool to help people find reliable, valid lupus information in almost any language lupusgpt.org
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Lupus Europe @lupuseurope.bsky.social · 03/07/2026
🤩 Lupus Europe is at #WCRSD2026! 👩 Our Vice-Chair & Secretary, Annemarie Sluijmers, is at this event organised by ERN Skin & the René Touraine Foundation. 🟪 Skin matters in lupus: in our 2020 survey, skin was affected in 59.4% of respondents. f.mtr.cool/snsdbfrskp
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Lupus Europe @lupuseurope.bsky.social · 30/06/2026
Also at: 🇩🇰 buff.ly/465c0qa 🇩🇪 buff.ly/3qNztvT 🇪🇸 buff.ly/3PkWoJ6 🇬🇷 buff.ly/43M03nH 🇫🇷 buff.ly/3qTgtMH 🇮🇹 buff.ly/46aep2X 🇳🇱 buff.ly/44cJ7GZ 🇷🇴 buff.ly/3p6LNqO 🇫🇮 buff.ly/3N909Pi 🇺🇦 buff.ly/445LCe7
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Lupus Europe @lupuseurope.bsky.social · 30/06/2026
UVC radiation facts: ➡️ Completely absorbed by the ozone layer. Doesn't affect us. ➡️ UVC lamps are used for disinfection purposes. However, they may pose potential health and safety risks. Find more info on ☀️ protection & lupus at lupus100.org/en/questions... #LupusUVprotection
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Lupus Europe @lupuseurope.bsky.social · 30/06/2026
UVB radiation facts: ➡️ Penetrates into the epidermis ➡️ 90% is absorbed by the ozone layer of the Earth🌏 ➡️ It is associated with sunburn 🔥 ➡️ Its intensity fluctuates during the day, reaching the highest intensity from 10am-4pm 🌇 #LupusUVprotection
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