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 CornetThe 22nd EULAR Annual European Conference of PARE took place in the stunning, historical city of Prague in the Czech Republic 5-7 April 2019 with over 120 delegates. PARE ‘People with Arthritis and Rheumatism in Europe’ forms an integral role at EULAR ‘The European League Against Rheumatism’. The presentations and workshops at the PARE Conference […]
Alain CornetWe all know that there remains a lot to explore, and many unmet needs are still there, with regards to lupus and people living with lupus in Europe and in the world. Since March 2018, a multidisciplinary team including doctors, academics and patient advocates have shared their thoughts and aligned priorities to improve lupus care. […]
🦋 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!
📣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
🦋 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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