HELP US COLLECT VALUABLE DATA FROM PEOPLE LIVING WITH LUPUS

As part of its cooperation with the ERN ReCONNET, Lupus Europe is launching an important survey, which we would like to ask you to disseminate as largely as you can to people actually living with lupus. We have made the effort of providing 13 different languages, and are open to adding new ones, so we hope that the responses will be at the measure of the effort. Our objective is to have at least 1 answer per 200,000 inhabitants in your country… Make the count and help us beat it.

The survey will be available at this link https://www.surveylegend.com/s/1gr6 till the end of June. It typically takes less than 5 minutes to complete.

While several questions are focused, on a current hot topic (discover which one by taking part in the survey 😊) there is more to it than you can think at a first glance. This survey is a first effort to collect some general information, which we will then be able to use next year when for the big Living with Lupus in 2020 survey. The more answers we get, the more feedback we obtain on the tool and the questions, … the better equipped we will be for the 2020 survey.

Share the link on  your Facebook group(s), send it to friends, encourage participation and distribute as widely as you can to people living with lupus, so that we gather valuable information. the only condition to participate is to have any form of lupus…

Thank you for your support

LUPUS EUROPE

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Alain Cornet

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    LUPUS EUROPE
    1 day ago

    🦋 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.     ... See MoreSee Less

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    LUPUS EUROPE
    2 days ago

    🦋 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     ... See MoreSee Less

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    LUPUS EUROPE
    3 days ago

    😃 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...     ... See MoreSee Less

    😃 Last week at #E
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    LUPUS EUROPE
    4 days ago

    💜 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.     ... See MoreSee Less

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