Alain CornetFor those of you who may have missed it or who are not signed up on our mailing list, here is the link to the convention report for LUPUS EUROPE’s annual convention which was held this year from 28th September – 2nd October 2016. If you don’t currently receive our newsletters and emails and would like […]
Alain Cornet2 weeks to go, Running for Lupus Hej, Tere, Hei, Χαιρετώ, Bonjour, Hallo, Helló, Ciao, Olá, Ahoj, Hallå, Hola, Grüezi, Halló, Dia dhuit, Shalom, As-salam alaykom, Buna, Sveiki, Zdravo Many things have happened since the last blog post. As you can see in the above picture, the t-shirt design has been finalised and ordered for printing. You will […]
Alain CornetThe 18th edition of the EULAR Annual European Congress of Rheumatology is now open for registration! To find out more, click here.
Alain CornetThere has been a good response to the sunscreens survey with 2,000 respondents so far. To really make sure this survey is a good reflection of our situations, more responses are needed. Please continue to share the link in your patient network. The deadline for responses is 31st October 2016. The European Society of Cutaneous Lupus […]
Alain CornetToday is World Arthritis Day. A day being honoured by The EULAR Conference on reducing the burden of chronic diseases in the workplace for people with RMDs. The conference is focusing on identifying and discussing relevant issues related to the working environment and how to move forwards. The conference was opened by EULAR president Prof. Gerd R. […]
Alain CornetEPF publishes a guide for patient organisations on the new Data Protection Regulation The new Regulation on personal data protection (EU/2016/679) was published in May 2016 and will apply from May 2018. It provides more rights to citizens to be better informed about the use made of their personal data, and gives clearer responsibilities to […]
The LUPUS EUROPE convention has come to a close. Four intensive days of work, sharing, inspiration, education and exchange! We have all learned a lot from each other and from the wonderful speakers who shared their knowledge with us. A huge thank you goes out to our members who made this convention a great success […]
🤩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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