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 CornetThe non-profit organisation ClAIR which groups lupus, arthritis and scleroderma associations (among them our French-speaking Belgian member) is organising a virtual congress from tomorrow, 30th March 2018, to 13th April included. LUPUS EUROPE will have a virtual stand in the congress. For more information, please see the press release: virtual congress CLAIR The congress is […]
Alain CornetLUPUS EUROPE was present once again at this year’s PARE conference, which was held from 16th-18th February in Brussels. PARE provides an opportunity to meet with other patient organisations who are members of the PARE network, to hear the latest updates on some of the programmes, to influence PARE’s priorities for the next year, and […]
Alain CornetLUPUS EUROPE is the organisation that brings 26 national lupus groups from all over Europe together. To better include all countries in its activities and work, it is opening up a number of interesting volunteering opportunities for members of our national groups. There is no need to be a Lupus Expert, all that is […]
Alain CornetLUPUS EUROPE BECOMES FIRST ASSOCIATE MEMBER OF SLEuro, the European Lupus Society We are very proud to announce that LUPUS EUROPE has just become the first Associate member of SLEuro, the European Lupus Society. SLEuro is a voluntary and non-political association with social and philanthropic purposes that promotes scientific research and information with regard to […]
Alain CornetAn ERN (European Reference Network) ReCONNET Survey on awareness and knowledge of Clinical Practice Guidelines in rare and complex connective tissue disorders will be open until 10th February 2018. These surveys provide vital information to the doctors and researchers setting guidelines for our care. This survey can be filled in by patients or their families […]
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 CornetMy first year with Lupus Europe – Sara Badreh Sara was elected to LUPUS EUROPE’s Board of trustees last October. Here is how she describes her first 8 months as a LUPUS EUROPE trustee: After an induction with the various trustees and learning more about LUPUS EUROPE in general, my first big conference was the […]
Alain CornetSome great news from Lupus UK – Janine, LUPUS UK National Office, organised 5 Runners in the Virgin London Marathon, 23rd April, with £4,290 being raised for LUPUS EUROPE. THANK YOU for your great work, Janine! Pictured below are Ed and Charlotte. Well done to you both and the other runners! For more information on […]
✅ Have you checked the @TheLancetRheum publication about #LupusGPT? If not, have a look at it: https://doi.org/10.1016/S2665-9913(25)00370-4
🦋 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!
https://www.linkedin.com/posts/lupus-europe_eular2026-lupusgpt-easylupus-activity-7472961160628199424-VXZu/
📅 Don’t miss out!
Today, 16 June, our General Secretary, Zoe Karakikla-Mitsakou, will speak alongside @G_O_Daniel at the @eular_org webinar “Implementation in real life”.
💬 They will share learnings from a co-designed lupus project on moving from SDH recognition to action.
💫 Last week at #EULAR2026, we were proud to share Alain Cornet’s poster POS0246-PARE 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.
Read it here:
💜 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.
⏰ 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 https://www.facebook.com/LupusEurope
Join us at 19h CET to explore key takeaways from the
🌟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!
🎥 Our Chair, @Jeanette_Lupus, explains at #EULAR2026 what #LupusGPT is and why reliable, understandable #lupus information matters.
Watch the full interview:
https://www.youtube.com/watch?v=plqZt7J142I
Thank you @eular_org for giving space to patient-led innovation on EULAR TV!
🦋 Our final #EULAR2026 recap is here!
🌍 We started the day in the session “Next-Gen Treatments: CAR-based Therapies and Beyond in RMDs”, chaired by our Chair, Jeanette Andersen.
The session explored new therapeutic frontiers, but also the responsibilities that come with them. For us, one message remains essential: innovation must be developed with patients, not only for patients.
💬 Jeanette also delivered the PARE Meet the EULAR Expert session “AI as a Partner in Care: Empowering the RMD Community with Information”.
The room was packed, showing the strong interest around #LupusGPT and #EasyLupus as powerful patient-led, validated digital tools that help people living with lupus access reliable, understandable information in almost any language.
The many questions from attendees showed how relevant this topic has become for healthcare professionals, researchers, patient representatives and the wider rheumatology community.
🧬 We also followed the “How to treat SLE” session with George Bertsias, who focused on current and evolving approaches in lupus care, including treat-to-target strategies, remission or low disease activity, and the importance of reducing long-term organ damage.
🦴 Later, Edward Vital led the Meet the EULAR Expert session on “Management of joint involvement in systemic lupus”, a topic that matters deeply to many people living with lupus.
💜 A special highlight of the day was seeing Lupus Europe’s work recognised during the EULAR highlights another year.
These sessions take place at the very end of the Congress and bring together the key takeaways from #EULAR2026. Importantly, there are no parallel sessions at that time, which means there is no competition with other talks, and most of the attendees are in the room.
🙏 Thank you to everyone who followed, shared, visited us, spoke with us and supported us throughout #EULAR2026.
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🦋 We continue bringing you our #EULAR2026 congress recaps!
The third day was another intense day for Lupus Europe, with patient-led research, emerging science and important conversations about lived experience, as well as ongoing and potential projects to improve lupus care.
🧠 One of the highlights was Alain Cornet’s poster on mental health trajectories in lupus: “Mapping mental health trajectories in lupus: patient-identified inflection points and support opportunities from a European patient panel”.
Presented by Ricky Chotai on Alain’s behalf, this patient-led work explored how people living with lupus and mental health difficulties understand mental health across the lupus journey.
Yesterday, we already told you more about this poster and its key messages, in case you missed it!
🦠 On 5 June, we followed emerging science on the microbiome, and the Meet the EULAR Expert session “Management of joint involvement in systemic lupus” with Professor Edward M. Vital.
📊 Disease activity measurement in SLE was another important theme, especially how clinical targets can be better aligned with lived experience.
♀️ Menopause was part of the day’s conversations, highlighting the importance of asking about it routinely and recognising how hormonal transitions may shape symptoms and quality of life.
🌍 Across the day, one message kept returning: better lupus care needs science, but also communication, patient priorities and tools that help people say what matters most.
That is exactly why tools such as the Lupus Consultation Cards matter. They are available in 20 languages and help people prepare for their lupus appointments by organising symptoms, concerns and top questions in advance. Check them out here: www.lupus-europe.org/lupus-consultation-cards/
💬 We kept connecting these discussions with #LupusGPT and #EasyLupus, because access to understandable, reliable information before and after consultations is part of helping people take a more active role in their care.
🥳 And we celebrated Jeanette's birthday!
😃 Want to know more? Catch up on the latest insights from the congress in our #EULAR2026 Recap Webinar, which you can watch here: www.facebook.com/LupusEurope/videos/2035644043691260
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😃 Last week at #EULAR2026, we presented POS0246-PARE, “Mapping mental health trajectories in lupus: patient-identified inflexion points and support opportunities from a European patient panel”.
The poster was presented by Ricky Chotai, Lupus Europe Board Member, on behalf of Alain Cornet, Lupus Europe Finance Lead & Organisation Coach, and lead author of this work.
✅ This patient-led qualitative work explored how people living with lupus and established, currently stable mental health difficulties understand the trajectory of mental health across the lupus journey.
‼️ Based on our patient panel conducted in Portugal with 8 adults living with lupus, the work identified key moments when support may matter most: diagnostic uncertainty, early disease phases, fluctuating symptoms, and communication with healthcare professionals.
🔴 One of the key messages is clear: mental health in lupus should not be seen only as an isolated symptom or crisis. It can be shaped over time by interactions with uncertainty, communication, and care structures.
The findings point to practical opportunities for support, including earlier acknowledgement of mental health concerns at diagnosis, normalising mental health discussions in lupus care, clearer communication during periods of uncertainty, peer support, and integrated psychosocial support throughout the disease course.
💫 Congratulations to Alain Cornet for this outstanding poster and to all authors: Zoe Karakikla-Mitsakou, Jeanette Andersen, Ricky Chotai, and Alain Cornet.
Read the abstract:
distribution-congress.eular.org/from.storage?image=15rRXWmdOAJ77zPlkD-rQtl85j9jAymUnt6XfjsO2C9rls...
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💜 Thank you to everyone who attended our EULAR 2026 Recap Webinar and joined us to look back at one of our most exciting congresses in recent years.
🤩 #Eular2026 has been intense, inspiring and full of moments we will remember.
Over the Congress, Lupus Europe contributed to and followed an incredible amount of work:
✅ 7 presentations as speakers
✅ 3 sessions chaired
✅ 66 sessions attended
✅ 318 presentations followed
✅ All the interviews you have been able to see in this webinar
But it is not only about numbers.
🌟It is also about the people behind them: the commitment, the humour, the hugs, the shared tiredness, the late nights, the conversations between sessions, and the spirit of this amazing Lupus Europe family.
What makes our work possible is not only the support we receive from our community, partners and friends.
🥰 It is also the energy, attitude, and generosity of our volunteers, who give their time, expertise and heart to Lupus Europe.
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