Zoe Karakikla-MitsakouSandra Schaftner volunteers for the German Lupus Group, Lupus Erythematodes Selbsthilfegemeinschaft e.V.. She is also one of the German-version translation volunteers of Lupus100. Lupus100.org is a MULTILINGUAL website run by Lupus Europe that contains clear answers to 100 questions about lupus. Lupus experts and patients have worked collaboratively on the website. Lupus100.org has also been […]
Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Ram Blass from Inbar who talked to us about the wonderful work the […]
Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Marga Schut and Wendy Zacouris from NVLE who talked to us about the […]
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 CornetLUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire […]
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 […]
Alain CornetOn December 6th Katharine Wheeler participated in the closing conference for EPF’s campaign on Access to Healthcare for All. At the conference EPF presented their Roadmap for Universal Health Coverage for all. Katharine was invited to speak as a patient organisation representative and stressed the importance of leaving no-one behind if we want to achieve […]
Alain CornetThe LUPUS EUROPE annual convention has just come to a close. Hosted in Milan by Lupus Italy on the occasion of their 30thanniversary, the convention was an inspiring event centred around the theme of “pain, fatigue and stress”, with Dr Chiara Tani as a key note speaker. Benefitting from the Italian Lupus Clinic experience, we […]
Alain CornetToday is World Lupus Day, a great time to be thinking about bringing the Lupus World together. ‘Meet the Lupus World’ is our theme for the Lupus Summit in Vienna on 5th September 2015. The summit will take place as an integral part of our annual convention. Make sure your group is represented by getting in touch with […]
Alain CornetIf you are a member of one of LUPUS EUROPE’s member organisations and are interested in getting more involved as a patient advocate – spreading awareness, attending events, working on specific projects… we would love to hear from you. Even if you can only offer a little of your time, your contribution could make a […]
🤩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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