Alain CornetWhat does quality of healthcare mean for you? Take the EPF survey! Deadline: 31st May 2016 Quality of healthcare is at the heart of European Patients’ Forum’s work. EPF is conducting a survey which aims to explore the perceptions of patients about what “quality” means for them, and what matters most in quality of care. Please note […]
Alain CornetThis week, our marathon hopeful, Andreas is running for France’s two lupus associations. This is a great opportunity to highlight a couple of World Lupus Day initiatives taken by these two associations. AFL + chair, Marianne Rivière, was interviewed for “pourquoi docteur”. You can find the full interview (in French) here. Among other activities planned […]
Alain CornetWhen I got my lupus diagnosis in 2011 I was a very active young woman with a teaching job and on my way to study for a PHD at Aarhus university. I have a master’s degree in German and Philosophy and I loved teaching. I used to be a fitness instructor during my studies and […]
Alain CornetFor World Lupus Day, Anne Charlet, vice chair of LUPUS EUROPE, was interviewed by MedTech. When Anne Charlet’s teenage daughter complained of extreme fatigue, she thought it was just end-of-school year tiredness or anaemia. But a precautionary blood test that revealed an unusually low platelet count led to a completely unexpected diagnosis several months later: […]
Alain CornetMy Lupus story doesn’t start in 1993 with an SLE diagnosis, but eight years earlier in 1985, when at the age of 22 I got pneumonia for the first time. O spent two weeks in hospital with a horde of doctors around my bed wondering why antibiotics weren’t working. The oldest doctor mentioned that I […]
Alain CornetWhen it was first suggested that I write a patient story for Lupus Europe, I have to say that I felt a little uncomfortable. Firstly, I’m an intensely private person and have so far never wanted to write about myself or write a blog. Secondly my ‘lupus’ is relatively mild (in the medical sense rather […]
Alain CornetI met my Lupus on a sunny day of April 2003 when I was 23 years old. A year ago, I was hospitalized because I fainted with seizures. At the time, the doctors told me that anyone can have such episodes once or twice during their life. However, a neurologist in training thought that I was […]
Alain CornetMy story – by Yvonne from the Netherlands On 6 July 2004, I woke up with a tremendous pain in my right hand. Because I also had a slight rash, my GP immediately referred me to a dermatologist. He examined me and referred me to a rheumatologist because he had a hunch what might be […]
Alain CornetFor World Lupus Day, we have collected a few patient stories which we hope you will enjoy. If you have a story to tell, feel free to get in touch and send your story to katharine@lupus-europe.org! All stories will remain visible on this page of the blog. My life with lupus – living to the […]
Alain CornetHere are a few pics from runs Andreas has taken part in so far… And, once again, a new post has been added to Andreas’ page. To read all about what he’s been doing so far, click here.
✅ Why some patients with #Lupus 🦋 have #brainfog remains unknown, but for sure the collective impact of brainfog is significant. Check our initial #LBFSS data about the FREQUENCY, INTENSITY & DURATION of brainfog 👀 in #SLE
📥 FULL (openaccess) paper: https://doi.org/10.1136/lupus-2026-002148
🧠 “Your experience of brain fog is real. It is common. It deserves attention.”
Prof @lupusreference & our Chair, @Jeanette_Lupus, explain how people living with #lupus helped shape the #LBFSS from the very beginning.
📖 Read the study: https://lupus.bmj.com/content/13/2/e002148
✅ If you have #lupus, PLEASE HELP US with the #CORRELATE study 👀🙏🔁 it will take just 5 minutes of your time and help us understand #brainfog
Take the study: https://lupusresearch.limequery.org/485358?lang=en
✅ Why some patients with #Lupus 🦋 have #brainfog remains unknown, but for sure the collective impact of brainfog is significant. Check our initial #LBFSS data about the IMPACT on LIFE, RELATIONSHIPS & WORK 👀 in #SLE
📥 FULL (openaccess) paper: https://doi.org/10.1136/lupus-2026-002148
✅ Check our latest contribution with @ERAkidney in @NatRevNeph on disease modification 🔥 in #lupus #nephritis & understand how an in-depth knowledge of #immunology can help selecting the best treatment at the individual patient level 🎯
📥 LINK: https://doi.org/10.1038/s41581-026-01103-y
‼️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 @SjogrenEurope to know more.
🤩 Exciting to see #COGNILUP reach this next step!
🧠 Healthy volunteers will help establish reference values, bringing us closer to a free, accessible tool for people with #lupus to understand their cognitive function.
💜 Congratulations to Prof @lupusreference & all involved!
✅ Now that the #LBFSS is available for #brainfog, we are moving forward to TEST OBJECTIVE COGNITIVE FUNCTION 🧠 in #lupus 🦋 with #COGNILUP, for FREE, for ALL.
The platform is entering its calibration phase with healthy volunteers so that we can know the norms for each test 👍
✅ Thank you @LupusEurope for highlighting the #Lupus #BrainFog Severity Scale (#LBFSS). This new PRO specifically designed for assessing the SEVERITY OF BRAINFOG was co-developed with the participation of patients from @LupusEurope at every step 👍
🧠 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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🧠 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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