Alain CornetHas your member group registered for the LUPUS EUROPE convention yet? Remember that the deadline for special conditions is 15th June 2016. The convention will take place in the beautiful historical city of Würzburg, Germany from 28th September – 2nd October 2016. It is also an important occasion for our hosts, the German Lupus association, who are […]
Alain CornetThis week Andreas’ is running with the German Lupus association who are celebrating their 30th anniversary this year – and hosting our annual LUPUS EUROPE convention as part of those celebrations. Click the flag to see more.
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 […]
🦋 According to our "Living with Lupus in 2020" survey, UV sensitivity ranks among the most common and bothersome symptoms for those living with #lupus.
🔊 Join us! Share how this facet of #SLE limits your daily activities and the strategies you use to #KickLupus and UV light
✅ Very happy to report that we have completed the entiere STEP1 of #ENDORSED, the international #consensus definition of #SEVERE #LUPUS by the #DORIS group gathering 50+ potential facets of severity thanks to the international panel of HCPs (step 1a) and patients (step 1b) 👍
✅ Using #ChatGPT to generate a POST-#EULAR2025 summary about #Lupus ⬇️ how did I do that?!? I performed a search for 'lupus' in the online program of the congress🔎 copy-pasted the results in chatGPT and used it to perform a 'thematic analysis' on the results 💪👍 FASCINATING
🌟Thank you to all who attended our #EULAR2025 debrief webinar!
🙌 Especially to our presenters, volunteers & PAN members who shared their insights & experiences.
Stay tuned for more news and updates & don't forget to subscribe to our newsletter! https://www.lupus-europe.org/emails/
On #ChronicDiseaseDay, our #3TR patient representatives shared what keeps them going: their families, their friends, and the patient communities they’re part of. 💪❤️
👇 Tell us: who do you stay strong for?
#ChronicDiseaseDay #Lupus #MS #Asthma
⏰ Just 1 hour left for our #EULAR2025 highlights webinar!
😨 You haven't registered yet? Don't worry! We have🔝news for you!
✅ You can still catch all the insights live on our Facebook page https://f.mtr.cool/rfbzgadqse
Join us at 18h CET to explore 🗝️ takeaways from the Congress!
🔊Listen to the #eularPARE podcast, "Working with an RMD: Real Stories, Real Strategies".
🎙️Hear inspiring guests share practical tips for managing work life while living with an RMD.
Join here:
Spotify: https://pulse.ly/mo14plakig
Apple: https://pulse.ly/ceantfnfwd
#Rheumatology
🌟Our #EULAR2025 highlights webinar is tomorrow!
👨⚕️Some of the presenters will share the main takeaways from their talks.
🦋Also, some of our volunteers will share their insights from the Congress.
Don’t miss this opportunity!
Register now by ✉️ secretariat@lupus-europe.org
😨 Did you miss our #EULAR2025 debrief webinar?
😮💨 Don't worry! You can watch the full session at your convenience.
Catch up on all the insights shared by many of the presenters, as well as some of our volunteers and PAN members, on our Facebook page!
www.facebook.com/LupusEurope/videos/1257813502412444
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‼️ According to our "Living with Lupus in 2020" survey, 𝐔𝐕 𝐬𝐞𝐧𝐬𝐢𝐭𝐢𝐯𝐢𝐭𝐲 𝐫𝐚𝐧𝐤𝐬 𝐚𝐦𝐨𝐧𝐠 𝐭𝐡𝐞 𝐦𝐨𝐬𝐭 𝐜𝐨𝐦𝐦𝐨𝐧 𝐚𝐧𝐝 𝐛𝐨𝐭𝐡𝐞𝐫𝐬𝐨𝐦𝐞 𝐬𝐲𝐦𝐩𝐭𝐨𝐦𝐬 for those with lupus.
😱 In fact, 𝟔𝟖.𝟓% of respondents reported experiencing sun sensitivity, making it a significant concern for many.
💥 UV sensitivity can greatly limit daily activities and impact the quality of life for people with lupus. Here are a few examples:
🏗️ 𝐎𝐮𝐭𝐝𝐨𝐨𝐫 𝐣𝐨𝐛𝐬: Those who work outdoors, such as in construction, agriculture, or any job requiring prolonged sun exposure, often struggle to manage their symptoms.
The need to stay covered and protected from the sun can make these jobs particularly challenging.
🏖️ 𝐅𝐚𝐦𝐢𝐥𝐲 𝐚𝐧𝐝 𝐬𝐨𝐜𝐢𝐚𝐥 𝐥𝐢𝐟𝐞: UV light can significantly impact social and family life for individuals with lupus.
Activities such as spending a day at the beach, attending park outings, enjoying barbecues, and participating in festivals or outdoor events become challenging due to the need for constant sun protection.
This often means seeking shade, wearing protective clothing, and applying sunscreen regularly, which can limit spontaneity and enjoyment.
For some patients, the sensitivity to UV light is so severe that they cannot attend these events at all, as exposure could trigger a lupus flare, further limiting their ability to engage in social and family activities.
🔊 Join us this month as we share tips and strategies to manage UV sensitivity and protect yourself from the sun.
😊 Share your experiences and how you #KickLupus & UV light in your daily life
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🟣 Phase 2 of LUPUS-ALERT is now complete!
Thanks to the incredible contributions of patients and healthcare professionals from around the world, we are one step closer to creating a tool that will screen for vulnerabilities people may face during lupus care.
🔍 LUPUS-ALERT is a project co-developed by patients and clinicians that will systematically screen for vulnerabilities that can impact lupus management:
🔷 Associated conditions
🔷 Comorbidities
🔷 Social and economic context
🔷 Challenges and barriers — like language, access to medication, or distance to care
🙌 Thank you to everyone who has helped shape this project so far. Your input is helping shape a more equitable and person-centred future for lupus care.
💜 A very special thank you to Prof Laurent Arnaud and Dr Guimarães de Oliveira for their commitment and dedication throughout this process!
📌 Stay tuned — more to come soon!
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🌟Thank you to all who attended our #EULAR2025 debrief webinar!
🙌 Especially to our presenters, volunteers & PAN members who shared their insights & experiences.
Stay tuned for more news and updates & don't forget to subscribe to our newsletter! www.lupus-europe.org/emails/
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