LUPUS EUROPE

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LUPUS EUROPE

Uniting People with Lupus throughout Europe We are a non profit independent organisation.

LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across Europe. We aim to support and empower our national organisation members, sharing information with them and promoting better patient-centred processes, both within the healthcare field and at a political level. We also work tirelessly to improve access to healthcare for all lupus

patients, advocating on their behalf at EU level. LUPUS EUROPE VISION:

A fulfilling life for all people with lupus in Europe until we have reached a world without lupus.

18/06/2026

🦋 Our final 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 and 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 . 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 .

17/06/2026

🦋 We continue bringing you our 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: https://www.lupus-europe.org/lupus-consultation-cards/

💬 We kept connecting these discussions with and , 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 Recap Webinar, which you can watch here: https://www.facebook.com/LupusEurope/videos/2035644043691260

16/06/2026

😃 Last week at , 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:
https://distribution-congress.eular.org/from.storage?image=15rRXWmdOAJ77zPlkD-rQtl85j9jAymUnt6XfjsO2C9rlsAWrWDTshxIuufddQ4e0

15/06/2026

💜 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.

🤩 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.

15/06/2026

EULAR 2026 Recap Webinar

15/06/2026

⏰ Just 1 hour left for our 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 page https://www.facebook.com/LupusEurope

Join us at 19h CET to explore key takeaways from the Congress!

14/06/2026

🌟Our 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!

✉️ Register now by sending an email to [email protected]

12/06/2026

🎥 Last week, during , the Chair of Lupus Europe's Board of Directors, Jeanette Andersen, was interviewed on EULAR TV about .

Watch as she explains what is and why reliable, understandable lupus information is important for patients and for lupus care.

🦋 is patient-led, built with clinicians, patients and IT experts, and grounded in trusted lupus resources.

is not a replacement for healthcare professionals, but it helps people better understand lupus information and prepare more informed questions for their physicians.

📺 Watch the full interview on the EULAR YouTube channel:

https://www.youtube.com/watch?v=plqZt7J142I

Thank you EULAR for giving space to patient-led innovation on EULAR TV!

11/06/2026

📣Don’t forget!

Our 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 [email protected]

09/06/2026

✅ has finished, but we still have a lot to tell you!

🦋 Day 2 at the EULAR Congress showed why patient involvement matters across research, care, digital innovation and outcome measurement.

🥰 Lupus Europe was proud to contribute to several key sessions.

💬 Zoe Karakikla-Mitsakou, our General Secretary, presented and in the Meet the EULAR Expert session on AI as a partner in care, highlighting patient-led, reliable and accessible digital information.

🌍 Zoe also spoke in the session “Bridging the Gap: Expanding Rheumatology Access for Underserved and Underrepresented Communities”, sharing insights from local patient panel work in Portugal and how patient organisations can help identify real-world barriers to care, especially for people we do not always reach.
Thank you to Dr Daniel Guimaraes de Oliveira for his contribution and support in this important project.

🧩 Our Chair, Jeanette Andersen, delivered an inspiring presentation on non-pharmacological interventions in connective tissue diseases, bringing the patient perspective into discussions on physical activity, and the need for psychosocial support and personalised care beyond medication.

📊 Another highlight of the day was Jeanette co-chairing, together with Prof Laurent Arnaud, the session on measurement of disease activity in SLE clinical trials. The session explored how we measure lupus arthritis, treatment outcomes and remission, and why outcome measures must better reflect the reality of living with lupus.

💫 Our team also followed key sessions and poster tours on epidemiological data for advocacy, access and empowerment, and therapeutic advances in lupus.

And throughout the day, we continued welcoming visitors at the Lupus Europe booth, sharing our projects, tools and conversations with the wider rheumatology community.

Would you like to hear more from our team?

📅 Join our recap webinar on 15 June at 19:00 CET, Paris time.

You will hear key takeaways from our team, plus videos from some speakers explaining their presentations in patient-friendly language.

✅ To register, email [email protected]

Adres

Rue D'Egmont 11
Brussels
1000

Website

http://lupus-europe.org/

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