Alain CornetDid you know? Lupus is a Rare Disease! Lupus is rare, but not for us! Come and join us working on our vision: A fulfilling life for all people with Lupus in Europe until we have reached a world without Lupus What is a rare disease? It changes from country to country, but in Europe […]
Alain CornetWe would very much like to share some news with you! If you are a Lupus Europe member or potential member, volunteer or potential volunteer, or simply a member of the patient community interested in the activities of LUPUS EUROPE, join us on February 17, 2020 at 20:00 Paris time. On the agenda:– Introduction of […]
Marisa Costa20th annual European Congress of Rheumatology took place in Madrid in June 2019. The Congress was hosted by the European League Against Rheumatism (EULAR) and jointly organised with the Paediatric Rheumatology European Society (PReS). There were 14,500 attendees from 120 countries and the scientific programme included presentations from 4,900 abstracts submitted. Three Trustees attended the […]
Alain Cornet30 Years ago, on May 26, 2019, LUPUS EUROPE’s Constitution (then under the name of ELEF) was signed… The European Lupus Federation was born. as we celebrate this anniversary, we asked current and past Chairs to reflect on those years in support of People living with lupus in Europe. Yvonne Norton, Chair from 2002 […]
Alain Cornet“INTEGRATing patient reported outcomes, clinical data and quality indicators to physician drive data in clinical management of chronic rheumatic diseases: the paradigm of Systemic Lupus Erythematosus” You may recall a request from Lupus Europe, on behalf of the Integrate Project, to complete an on-line survey. Over 750 people completed the questionnaire which is a fabulous […]
Alain Cornetin only 2 days, the INTEGRATE and ERN ReCONNET surveys will be closed. Yet, we miss feedback from several countries, and only have 1 or 2 answers from others. It would really help our understanding of lupus and the interactions with Doctors if we had more answers from more locations. please help us gather that […]
Katharine WheelerThe LUPUS EUROPE 2018 convention is underway in Leuven, Belgium and among the serious speeches on medical and psychological topics, we were delighted to be presented the beautiful (and very creative) word cloud entries in the Kick Lupus competition. All in all there were 35 entries to the competition, a great response! The judges on […]
Alain CornetIn 1989, LUPUS EUROPE (then named ELEF)’s first convention took place near Brussels, in the historical city of Leuven. 29 years later, LUPUS EUROPE 2018 annual convention will once again take place in Leuven, and we are looking towards a record attendance with already 41 registrations confirmed. As the convention unfolds, we will make available […]
Alain CornetToday is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals. Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from […]
Alain CornetWe at LUPUS EUROPE wish you all a great World Lupus Day, full of hope and awareness! For this we have created a little animated video about LUPUS EUROPE. Please feel free to share! [wpvideo ILoguQxs] We would also like to repost a video made a couple of years ago about the importance of World […]
🤩What an amazing #EULAR2025 Congress!!
🔝Congratulations to @eular_org & the whole team for the outstanding organisation and speaker line-up!
Happy with our performance and extra proud this year— #LupusGPT won the #MadeWithPatients Award 2025!
See you in London at #EULAR2026!
We are so #proud at @LupusEurope for being featured in the closing plenary. Thanks #eular2025 for highlighting this amazing tool.
#lupusgpt
Find out more at. https://lupusgpt.org/
#Lupus is one of the biggest social discriminators
🔺️Higher prevalence in Women
🔺️Higher prevalence in Non-Whites
🔺️More catastrophic manifestations in low socioeconomic groups
Disaster Medicine Session
Social disparities and impact on outcomes
#EULAR2025
@RheumNow
Thank you to @SEReumatologia for highlighting #LupusGPT!
#EULAR2025
@DrGomezPuerta @Reumaclinic @AlvaroGraciaSER @ReumaVHebron @GVADrPeset @Inmusc1 @reumahulp @RaquelAlmodovaG @ReumaValdecilla @MPaulinoreuma @Maitesidi @reumacastro @ligareuma @RusinovichOlga @ReumaPdeHierro En #EULAR2025, de la mano de @TuLupus conocemos la iniciativa de @LupusEurope: #LupusGPT. Las asociaciones interesadas en hacer un proyecto similar para otras patologías, ¡atentas al final del vídeo porque están dispuestas a ayudaros!
#Equality vs. #Equity
Some people may need more than others
Disaster Medicine Session
Social disparities and impact on outcomes
#EULAR2025
@RheumNow
😃 #LupusGPT has been highlighted once again at @eular_org PARE Highlights session, recognising its value as a patient-driven, multilingual tool that makes reliable lupus info accessible worldwide.
A great example of how co-creation with patients leads to🔝innovation!
#EULAR2025
Research & health projects must be based on true co-creation, engaging trained patient partners in all stages of research.
Our Patient Advisory Network (PAN) ensures that patient voices actively shape research to deliver meaningful & patient-relevant outcomes
#EULAR2025
Digital health has evolved a lot, but there’s still a lot we can improve.
That’s where tools like #LupusGPT and #EasyLupus can make a change!
Great and dynamic talk by Dr Rafael Prieto Moreno, from @openreuma!
#EULAR2025
🏆 We’re thrilled to announce that #LupusGPT has won the PFMD #MadeWithPatients Award 2025 as Best Emerging Innovation!
🌍A huge moment for Lupus Europe & the European #lupus community — proving what’s possible through true patient innovation and collaboration.
😃Celebrating at #EULAR2025!
#PEOF2025
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🏆 This Wednesday, we will find out if LupusGPT will win the PFMD Made with Patients Award 2025!
🎉 Join us in this exciting moment for the lupus community by watching the ceremony live online (registration is available at the link provided in our blog post).
👉 If you still don’t know what this huge achievement means, read our latest blog post, where you will also find the link to register for the live ceremony at the Patient Engagement Open Forum (PEOF).
💜 Created by patients, for patients, #LupusGPT and #EASYLupus are already breaking barriers in access to reliable, multilingual lupus information. Check the tool out and explore how easy it is to access valid and clear lupus information in your language.
Remember! All the information and links are available in our latest blog post!
www.lupus-europe.org/lupusgpt-made-with-patients-awards-2025/
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🟣 LUPUS-ALERT is moving forward!
Thanks to the amazing collaboration between healthcare professionals and patients, we’ve now identified many potential vulnerabilities that can impact access to appropriate lupus care.
We want to extend a special thank you to all the lupus patients who responded to our call and shared the barriers patients may face: financial, social, linguistic, geographic…
🌟 Your contribution is helping to develop a tool that will systematically identify the vulnerabilities patients face. This is a wonderful step towards lupus care that is more holistic, equitable, personalised, and responsive to patients' real-life needs.
🔝 A huge thank you to Prof. Laurent Arnaud, Dr. Daniel Guimarães de Oliveira - Imunologia Clínica, Jeanette Andersen, and Zoe Karakikla-Mitsakou for their invaluable contributions and commitment to LUPUS-ALERT!
🌍 And a special thank you to the many physicians and patients who have come together to work on this project for the benefit of lupus patients.
🚀 #LupusAlert now moves into Step 2!!!
🔔 Stay tuned!
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#EULAR2025 is around the corner!
🦋 Lupus Europe plays a significant role in this year's Congress, with a diverse range of exciting topics and great participation.
✅ We will be sharing insights from most of the lupus sessions on X, so don't forget to follow us!
😃 Stay tuned!
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