The LUPUS EUROPE Patient Panel is underway

It is starting!

After intense preparation, the second LUPUS EUROPE patient panel is now taking place in Brussels. From Friday to Sunday, nine patients from all over Europe will be discussing the theme of living with lupus, with a specific focus on treatment day after day.
Several focus groups and workshops have been scheduled, and we will once again benefit from new insights from UCB, this time on patient aspects and participation in Clinical trials, which we will be able to tie in to our reality.
Group discussions will be moderated by Bernadette (from Lupus Belgium) and Kirsi (from Lupus Finland)…. All participants are enthusiastic, and the sun is shining over Brussels!
More to come with some of the panel results!
Alain Cornet (Secretariat and Patient Panel facilitator)
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Alain Cornet

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    LUPUS EUROPE
    23 hours ago
    LUPUS EUROPE

    🌟This December, we're embarking on a mission that holds the key to effective #lupus management.

    🤔 Can you crack the code and guess the theme that ties us together this month?

    Stay tuned as we unveil the secret to a healthier, empowered lupus journey.

    🚀 Let the guessing game begin!

    #kicklupus     ... See MoreSee Less

    🌟This December, were embarking on a mission that holds the key to effective #lupus management. 🤔 Can you crack the code and guess the theme that ties us together this month? Stay tuned as we unveil the secret to a healthier, empowered lupus journey. 🚀 Let the guessing game begin! #KickLupus
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    How to try "tame the Wolf" or at least not let "Wolfie" run amock perhaps?

    LUPUS EUROPE
    2 days ago
    LUPUS EUROPE

    🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.

    In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have:

    🔹 57.9% of respondents said SLE negatively affected their careers.
    🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
    🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.

    🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.

    🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.

    #WorldDisabilityDay
    #IDPWD
    #InternationalDayOfPersonsWithDisabilities     ... See MoreSee Less

    🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities. In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have: 🔹 57.9% of respondents said SLE negatively affected their careers. 🔹 Nearly 50% faced challenges in daily activities, from studying to family life. 🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients. 🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus. 🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all. #WorldDisabilityDay #IDPWD #InternationalDayOfPersonsWithDisabilitiesImage attachmentImage attachment
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    LUPUS EUROPE
    2 weeks ago
    LUPUS EUROPE

    🚨 One of the several factors that could potentially trigger or worsen #lupus flares is 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀.

    ⚠️ Did you know that around 𝗵𝗮𝗹𝗳 𝗼𝗳 #𝗦𝗟𝗘 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 𝘀𝗲𝘃𝗲𝗿𝗲 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻s, with 11–23% of hospitalisations linked to these complications?

    🦠 Infections not only impact overall health but are also considered a higher risk factor for mortality in lupus patients than the disease activity itself.

    💎 This highlights the importance of 𝘁𝗮𝗸𝗶𝗻𝗴 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝘃𝗲 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝘀, such as vaccinations, to reduce infection risks and keep your lupus under control.

    #kicklupus by talking to your physician about vaccination and other prevention measures!     ... See MoreSee Less

    🚨 One of the several factors that could potentially trigger or worsen #lupus flares is 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀. ⚠️ Did you know that around 𝗵𝗮𝗹𝗳 𝗼𝗳 #𝗦𝗟𝗘 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 𝘀𝗲𝘃𝗲𝗿𝗲 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻s, with 11–23% of hospitalisations linked to these complications? 🦠 Infections not only impact overall health but are also considered a higher risk factor for mortality in lupus patients than the disease activity itself. 💎 This highlights the importance of 𝘁𝗮𝗸𝗶𝗻𝗴 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝘃𝗲 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝘀, such as vaccinations, to reduce infection risks and keep your lupus under control. #KickLupus by talking to your physician about vaccination and other prevention measures!Image attachment
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    LUPUS EUROPE
    2 weeks ago
    LUPUS EUROPE

    🚨 According to Profs. @RMD_clinic & @lupusreference, 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀 𝗮𝗿𝗲 𝗮 𝗿𝗶𝘀𝗸 𝗳𝗮𝗰𝘁𝗼𝗿 𝗵𝗶𝗴𝗵𝗲𝗿 𝘁𝗵𝗮𝗻 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 for mortality in #SLE patients 👉 buff.ly/3rUWfTt

    🙌 This month, we talk about prevention to #KickLupus     ... See MoreSee Less

    🚨 According to Profs. @RMD_clinic & @lupusreference, 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀 𝗮𝗿𝗲 𝗮 𝗿𝗶𝘀𝗸 𝗳𝗮𝗰𝘁𝗼𝗿 𝗵𝗶𝗴𝗵𝗲𝗿 𝘁𝗵𝗮𝗻 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 for mortality in #SLE patients 👉 https://buff.ly/3rUWfTt 🙌 This month, we talk about prevention to #KickLupus
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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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