iiinova — where your digital self keeps evolving

Lupus Europe @lupuseurope.bsky.social · 14h

🌟 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 · 15h

🟣 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 · 16h

🧐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 · 17h

🎈 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 · 17h

🎈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 · 19h

💁🏻‍♀️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 · 20h

🏃‍♀️ 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 · 20h

🔬 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 · 21h

📚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 · 21h

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 · 22h

🦋 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

🔴 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 · 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 · 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

☀️ 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

Solar radiation is composed, among others, of: 🔸 Infrared (IR). 🔸 Visible light. 🔸 Ultraviolet (UV) light, which has 3 types: UVA, UVB and UVC. 🔴 UV radiation is most associated with flare risk and exacerbation of symptoms in #lupus. Some UV facts 🧵 ⤵️ #LupusUVprotection

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Lupus Europe @lupuseurope.bsky.social · 30/06/2026

😃 Today we are taking part in the DORIS+ meeting alongside clinicians➕researchers like @anisurrahman.bsky.social & @ioannisparodis.bsky.social. 🦋 DORIS+ builds on the original DORIS definition & explores deep remission, with relevance for research, care & people living with #lupus

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Lupus Europe @lupuseurope.bsky.social · 27/06/2026

1/4 🔴 Healthcare professionals: Do you discuss extreme heat safety with your patients? 🦋 Patients: Has your doctor ever explained how to protect yourself during a #heatwave? Extreme heat can affect health, especially in people with #lupus. Reliable information matters.

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Lupus Europe @lupuseurope.bsky.social · 25/06/2026

🎥 Our #EULAR2026 recap webinar is now on YouTube! Lupus Europe volunteers bring back some key learnings: fatigue, pain & lived experience, #LupusGPT, access, youth co-creation & new research directions. Thank you to those who helped make this possible youtu.be/IrKhqTZhX-s?...

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Lupus Europe @lupuseurope.bsky.social · 24/06/2026

‼️ Although not everyone is photosensitive, UV exposure could trigger flares in some people with #lupus. ☀️ UV rays are present year-round! Always protect your skin. Especially this Summer! 🤔 Questions? Explore reliable resources like #Lupus100 or ask #LupusGPT or #EasyLupus!

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Lupus Europe @lupuseurope.bsky.social · 20/06/2026

🦋 Our final #EULAR2026 recap is here! From Jeanette’s packed Meet the Expert Session on #LupusGPT to seeing Lupus Europe’s work recognised in the @eular.org highlights. Read it now 👉 f.mtr.cool/mhxjconurv

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Lupus Europe @lupuseurope.bsky.social · 17/06/2026

🦋 Our recap for 5 June at #EULAR2026 is now out! Read more about key lupus moments from day 3, from lived experience to tools that help people say what matters most. Don’t miss out on the latest on menopause in RMDs, our poster on mental health & more! www.linkedin.com/posts/lupus-...

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Lupus Europe @lupuseurope.bsky.social · 16/06/2026

💫 Last week at #EULAR2026, we were proud to share Alain Cornet’s poster on mapping mental health trajectories in lupus. Presented on his behalf by Ricky Chotai, it highlights key moments across the disease journey where support may matter most. distribution-congress.eular.org/from.storage...

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Lupus Europe @lupuseurope.bsky.social · 15/06/2026

💜 Thank you for attending our #EULAR2026 Recap Webinar! 7 presentations as speakers 3 presentations as chairs 66 sessions attended 318 presentations followed But behind the numbers, there is something even stronger: the people, the energy & the Lupus Europe family spirit. Thanks for your support!

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Lupus Europe @lupuseurope.bsky.social · 15/06/2026

⏰ Just 1 hour left for our #EULAR2026 highlights webinar! 😨 You haven't registered yet? Don't worry! We have great news for you! ✅ You can still catch all the insights live on our Facebook page www.facebook.com/LupusEurope Join us at 19h CET to explore key takeaways from the Congress!

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Lupus Europe @lupuseurope.bsky.social · 14/06/2026

🌟Our #EULAR2026 highlights webinar is tomorrow! 👨‍⚕️Some of the presenters will share key takeaways from their talks in short videos. 🦋Also, some of our PAN members will share their insights from the Congress. Don’t miss this opportunity! Register now by ✉️ secretariat@lupus-europe.org

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Lupus Europe @lupuseurope.bsky.social · 13/06/2026

🎥 Our Chair, Jeanette Andersen, explains at #EULAR2026 what #LupusGPT is and why reliable, understandable #lupus information matters. Watch the full interview: www.youtube.com/watch?v=plqZt7J142I Thank you @eular.org for giving space to patient-led innovation on EULAR TV!

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Lupus Europe @lupuseurope.bsky.social · 11/06/2026

📣Don’t forget! Our #EULAR2026 Recap Webinar is coming up on June 15 at 19:00 CET, Learn some key highlights from one of our most exciting congresses in recent years, including scientific insights brought directly by speakers through short videos. 📩 Register now! email secretariat@lupus-europe.org

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Lupus Europe @lupuseurope.bsky.social · 10/06/2026

🦋What an amazing second day at #EULAR2026! A 🔝 day for Lupus Europe, with Zoe presenting #LupusGPT & our local patient panel work, and Jeanette speaking about non-pharmacological treatment & co-chairing. Read our day 2 recap www.linkedin.com/feed/update/urn:li…

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Lupus Europe @lupuseurope.bsky.social · 09/06/2026

🦋Last week at #EULAR2026, Lupus Europe covered key lupus-related sessions, posters & discussions through our PAN and Board members. From fatigue to Sex & Lupus, SDH, digital tools & patient communication. Read the full recap: www.linkedin.com/feed/update/urn:li…

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Lupus Europe @lupuseurope.bsky.social · 07/06/2026

🤩 #EULAR2026 has been a blast! Now it’s time to look back at some of the key lupus-related insights, data & messages from this year’s Congress. Join us for our @eular.org recap webinar! 📅June 15 🕖 19:00 CET ✅ To register, email secretariat@lupus-europe.org Don’t miss it!

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Lupus Europe @lupuseurope.bsky.social · 06/06/2026

🤩 What an amazing #EULAR2026! Congratulations to @eular.org and the whole team for the 🔝 organisation and speaker line-up. We leave London happy & proud of Lupus Europe’s contribution this year, from patient-led research to #LupusGPT & the patient voice across sessions. See you at #EULAR2027!

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Lupus Europe @lupuseurope.bsky.social · 06/06/2026

A useful checklist from Gerd R. Burmester on how to avoid hallucinations in LLMs: ✅ Clear context ✅ Trusted sources ✅ Verified data ✅ “I don’t know” when needed For #LupusGPT, we also added validation by doctors and patients to ensure accuracy, understandable language and the right tone. #EULAR2026

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Lupus Europe @lupuseurope.bsky.social · 06/06/2026

At “AI vs The Doctor: (When) will AI replace the rheumatologist”, Gerd R. Burmester focused on hallucinations in LLMs in medicine. LLMs are powerful, but fallible. #LupusGPT is designed to limit this risk through validated sources, low creativity, clear limits and no guessing. #EULAR2026

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Lupus Europe @lupuseurope.bsky.social · 06/06/2026

A very useful checklist for ethical AI in rheumatology: 🔹Bias 🔹Privacy 🔹Transparency 🔹Human oversight 🔹Regulatory compliance 🔹Lifecycle monitoring. These are the principles at the core of #LupusGPT, from validation to clear boundaries. #EULAR2026

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Lupus Europe @lupuseurope.bsky.social · 06/06/2026

“Where does the data go?” A crucial question in clinical AI, and one that sits at the heart of responsible patient-facing tools. #LupusGPT was designed with privacy-conscious access, no login, clear safeguards and a validated document library. Safety is also architecture. #EULAR2026

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Lupus Europe @lupuseurope.bsky.social · 06/06/2026

“Can AI say I don’t know?” This is exactly why #LupusGPT was designed with clear boundaries: when the answer is not in its validated library, it does not guess. In patient information, safety is not only about answering. It is also about knowing when to say “I can’t answer”. #EULAR2026

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Lupus Europe @lupuseurope.bsky.social · 06/06/2026

Thank you to Johannes Knitza for mentioning #LupusGPT as a precedent in the validation of AI tools in rheumatology. High acceptance is important, but validation is what makes these tools credible, safer and useful for real-world patient information. #EULAR2026

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Lupus Europe @lupuseurope.bsky.social · 06/06/2026

Another of the #EULAR2026 Highlights: chronic pain in RMDs. Chronic pain is a public health priority, and early pain phenotyping may help support more targeted, stratified management. An important message for HPR care.

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