“Living with lupus in 2020” survey – answer now before it closes May 31

On May 10, Lupus Europe launched its “living with lupus in 2020” survey. In only 10 minutes, participants provide a maximum of input to help us understand multiple impacts of living with lupus today : Family and couple life, studies, work, symptoms and treatments, Quality of life, access to health care,…

The survey is available in 20 languages, making it easy for all people living with lupus to take part. We have already collected more than 4,000 answers, but some geographies remain under-represented, and everyone’s voice counts.

GIVE 10 MINUTES OF YOUR TIME to help lupus research by answering the survey and relaying the survey link through social media, asking for more people to take part, not later than MAY 31.

Select your language and take the survey here: https://www.surveylegend.com/s/287a

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Alain Cornet

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    LUPUS EUROPE
    4 days ago

    🚨 New publication alert: EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement- 2025 update.

    ‼️ According to Lupus Europe's 2024 Swiss knife survey:

    1️⃣ Kidney involvement remains one of the most worrying and impactful lupus manifestations for many people in Europe.
    2️⃣ Kidney problems are among the manifestations causing the greatest long-term concern.
    3️⃣ Only a small minority of patients report long-term stability without flares.
    4️⃣ Patients want clearer goals, better communication, and care that looks beyond lab values alone.

    That is why the 2025 update of the EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement is such an important step forward.

    ✅ These updated recommendations reinforce several key messages that matter to patients:
    - Early and regular monitoring of kidney involvement.
    - Timely kidney biopsy when needed.
    - Clear treatment targets to preserve kidney function.
    - A strong focus on combination therapies when appropriate.
    - Long-term kidney protection, not only short-term control.

    🌟 We are especially proud that our Chair, Jeanette Andersen, was part of the international task force that developed these recommendations, ensuring that the patient perspective was present at the table.

    You can read the EULAR Recommendations here: ard.eular.org/article/S0003-4967(25)04412-7/fulltext

    And the Swiss Knife Survey here: www.sciencedirect.com/science/article/pii/S1568997225000989     ... See MoreSee Less

    🚨 New publication
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    LUPUS EUROPE
    7 days ago

    😃 Thank you to all who attended our latest Youth Group webinar!

    🌟 So many interesting questions were asked and addressed! Showing how important safe spaces arefor talking openly about lupus without judgment.

    Did you miss it? Watch it here! 👇

    Alcohol & Drugs - Lupus     ... See MoreSee Less

    😃 Thank you to al
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    LUPUS EUROPE was live.
    2 weeks ago

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    PlayAlcohol & Drugs - Lupus
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    LUPUS EUROPE
    2 weeks ago

    🚨 𝗟𝗮𝘀𝘁 𝗰𝗵𝗮𝗻𝗰𝗲❗

    🙏 Help Prof Laurent Arnaud and his team validate the Lupus Brain Fog Severity Scale.

    ✅ Make lupus brain fog measurable.

    ⏱️ 5 minutes of your time can make a huge impact!

    lupusresearch.limequery.org/337533?lang=en     ... See MoreSee Less

    🚨 𝗟𝗮𝘀�
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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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