Alain CornetOn Jan 20th, in Paris, the Organization for Economic Co-operation and Development (OECD) held a Forum on the Future of Health, with the tag line of “People at the Center”. The Organization provides a setting where governments can compare policy experiences, seek answers to common problems, identify good practice and coordinate domestic and international […]
Alain CornetKirsten represents LUPUS EUROPE at ERN meeting in Vilnius For tweets and pictures from the event, visit LUPUS EUROPE’s twitter page. From our recent newsflash: On March 9th EU President of the European Commission, Jean-Claude Juncker, opened the third meeting and Kick-off of the European Reference Networks (ERNs) taking place in Vilnius, Lithuania. Please see the short […]
Alain CornetMonday 27th saw the official launch of EPF’s campaign on Access to Healthcare at the European Parliament. LUPUS EUROPE has been involved in the Working group for this project and the working group met on Tuesday to discuss Monday’s meeting and the next steps and the work which remains ahead. There is still a lot […]
Alain CornetMarisa Costa has lupus and is currently planning to run a marathon in Aarhus, Denmark August 6 this year! She needs all the help she can get and has created a crowdfunding page (see link beneath). Please help by sharing her story and showing her your full support ? “I am Marisa Costa from Portugal. […]
Alain CornetAt the beginning of this year, LUPUS EUROPE launched a new initiative, called “LUPUS EUROPE catch-up”. The aim is to better keep in touch with our member groups throughout the year. The first member group we spoke to was Norway. Katharine Wheeler spoke to Kari Ødegård about the challenges and difficulties they face and […]
Alain CornetIn the context of EPF’s recent multi-stakeholder conference on Patient Safety, Katharine was asked to tell her story as an example of patient safety in a chronic disease setting. You can read about it on EPF’s blog. Living with Auto-Immune Diseases: A Patient Testimonial
Alain CornetBetter late than never… it is time to introduce our newest board member, Sara Badreh. Sara was elected to the board at our convention in Würzburg. We are delighted to have her on board and we’re sure that she will be a huge asset to our team. As you can see from her photo, Sara […]
Alain CornetLet’s Kick Lupus together in 2017 LUPUS EUROPE would like to extend warm wishes to all its members, partners and supporters. We hope that you all have a wonderful festive season and that the New Year is full of promise and fulfillment. 2016 has been a busy year for us, promising exciting times ahead. We […]
Alain CornetThe LUPUS EUROPE board met in Milan for a fruitful week-end of meetings from 9-11th of December. Several topics were on the agenda, including the very first preparations for the 2017 convention and mapping out the very busy 2017 calendar of events and work sessions. As well as the board (minus the wonderful Anne who was […]
Alain CornetThe Swedish Lupus group have sent us their report of the LUPUS EUROPE convention in Würzburg. It’s in Swedish – of course – but we thought it would be nice to share with you! Have you made a convention report for your group’s newsletter or magazine? If so we’d love to share it here too […]
✅ 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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