690 people participated in the European Lupus Meeting in Düsseldorf last week (March 21-24). This was 50% increase in comparison to the last ELM in Venice in 2016, which indicates a rising interest in this disease. Most of the participants were lupologists from all across Europe and there were even some from Australia, North- and South America. Lupus Europe was, however, also present and represented all European lupus patients throughout the Meeting. We discussed the future of clinical trials for lupus, the patients´ role in medical research, the importance of Patient Reported Outcomes (PROs), the classification of lupus, had meetings with industry and relevant partners and many many other things… We had a crazy busy schedule, but it was extremely interesting! Thank you to the patient representatives, who volunteered to help us during this great meeting!

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🧠 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
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‼️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.
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‼️Today is #Worl

🧠 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
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🦋 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
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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