Launch of Kick Lupus 2023 Competition

Volunteering can be incredibly rewarding, important, and empowering.

 

With that in mind we want to announce the Kick Lupus 2023 Competition, a competition that this year is all about volunteering!

 

To enter the Kick Lupus 2023 Competition, send us your testimonial on “How has volunteering for a lupus organisation helped changed my life?”

 

Let us know how volunteering for a lupus organisation helped change your life! You can do this in the format of your choice, whether that is a short video, a brief email, a long essay, a drawing, or cartoon or indeed any kind of format you choose!

 

To take part in the Competition you have to meet the following conditions:

 

  • Be a lupus patient living in Europe
  • You must be over 18 years old
  • You must make the submission yourself, in whatever format you choose
  • You must have experience volunteering for a lupus patient organisation

 

The prize is: The winner of this competition will be invited to the Lupus Europe 2023 Convention, which we hope will be in Lisbon!

 

Please send all submissions to: zoe@lupus-europe.org

 

The deadline to submit your testimonial is: February 28, 2023

 

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Zoe Karakikla-Mitsakou

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    LUPUS EUROPE
    9 hours ago

    🧠 As lupus specialist Prof Laurent Arnaud clearly states, “Your experience of brain fog is real. It is common. It deserves attention.”

    That is why the Lupus Brain Fog Severity Scale (LBFSS) was developed: to provide a lupus-specific way to assess the severity and impact of brain fog and related cognitive symptoms.

    Importantly, people living with lupus were not simply asked to approve a finished questionnaire. Their own descriptions of brain fog were the starting point for its development.

    🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain how people living with lupus helped shape the #LBFSS from the very beginning.

    🦋 Lupus Europe is proud to have contributed to this international work and to have supported meaningful patient involvement throughout the development process.

    📖 Read the study:
    lupus.bmj.com/content/13/2/e002148     ... See MoreSee Less

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    LUPUS EUROPE
    6 days ago

    ‼️Today is #WorldSjogrensDay, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.

    💁‍♀️ Although Sjögren's is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.

    ➡️ Follow Sjögren Europe to know more.     ... See MoreSee Less

    ‼️Today is #Worl
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    LUPUS EUROPE
    1 week ago

    🧠 Brain fog is real.

    For many people living with lupus, it affects everyday life, yet it has often remained difficult to measure.

    ✅ The new Lupus Brain Fog Severity Scale (LBFSS) is the first questionnaire designed specifically to assess brain fog in lupus.

    🦋 Lupus Europe is proud to have contributed to its development through meaningful involvement of people living with lupus. It's another example of how patient perspectives help shape better research and better tools.

    🎥 Watch Prof Laurent Arnaud and our Chair, Jeanette Andersen, explain why the LBFSS is such an important step forward in lupus care.

    lupus.bmj.com/content/lupusscimed/13/2/e002148.full.pdf     ... See MoreSee Less

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    LUPUS EUROPE
    2 weeks ago

    🦋 Understanding lupus is crucial for effective management and self-management.

    💁‍♀️ Many of us know what lupus is, and we’ve been learning from trusted resources like #Lupus100 and #LupusGPT.

    🤔 But… how much do we really know about SLE?
    Do we know as much as we think we do?

    𝐓𝐫𝐲 #𝐒𝐋𝐀𝐊𝐄 𝐚𝐧𝐝 𝐟𝐢𝐧𝐝 𝐨𝐮𝐭❗

    🎯 SLAKE (Systemic Lupus Assessment score for Essential Knowledge) is a quick and easy online tool designed for people living with lupus to test their knowledge and learn more about the disease.

    📝 44 questions, randomly selected from a pool of 394
    ⏱️ Around 15 minutes to complete
    🌍 Available in 20 languages
    📊 A score for each lupus domain and an overall knowledge score

    💡 Whether you're newly diagnosed or have been living with lupus for years, SLAKE helps you identify what you already know and where there is room to grow. It is not about passing or failing. It is a chance to learn more and feel more confident when taking part in decisions about your health.

    📣 The SLAKE study is still open! By taking part, you are helping researchers understand which aspects of lupus are well understood and where important knowledge gaps remain.

    These insights could help guide the potential development of better information resources and tools, tailored to the real needs of people living with lupus in different countries and regions.

    SLAKE has been made possible thanks to the leadership of Prof Laurent Arnaud and Dr Antonin Satrin, and the collaboration of an international team of lupus experts and patient representatives.

    🥰 Lupus Europe has proudly contributed to this project since the very beginning, and we encourage people living with lupus worldwide to take part while the study remains open.

    🔗 Complete SLAKE today and let us know what you think!

    lupusresearch.limequery.org/775349     ... See MoreSee Less

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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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