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.
Alain CornetMay 10th – World Lupus Day “Lupus knows no boundaries”. Special online events global campaign Please go to www.worldlupusday.org for further information. 11th May – EPF Access to healthcare workgroup meeting in Düsseldorf. Katharine Wheeler attending. June 8-11th – EULAR Congress, London, UK. This year LUPUS EUROPE and LUPUS UK will share a stand in EULAR […]
Alain CornetAs we approach World Lupus Day again, it’s a good time to share the video made last year about the importance of World Lupus Day. Feel free to share! [youtube https://www.youtube.com/watch?v=ae14ZLCdbqg&w=560&h=315]
🌍 This month in our #1Month1Study campaign: “Living with lupus in 2020”, a survey revealing the real burden of lupus across 35 European countries.
🦋 From diagnosis delays to daily impact, this study brings the patient perspective to the forefront.
https://doi.org/10.1136/lupus-2020-000469
🤔 What can kidney biopsies really tell us in lupus nephritis?
👨⚕️Prof Rovin explains why biopsy is key for diagnosis & treatment, & how research may help us get even more information from it in the future.
Watch the first video of our #ELM2026 playlist! https://youtu.be/nyw0Ug-Uap0?si=2z1V0WfUnAkJlHnf
🌈 The right to health is a basic human right. Everyone must have access to the health services they need when & where they need them without 💶 hardship.
😔 30% of the global population is not able to access essential health services.
#StandWithScience #WorldHealthDay
Science works better together. 🔬
On #WorldHealthDay, #3TR celebrates the power of collaboration. By working across academia, pharma and patients we aim to better understand response and non-response to therapy and make personalised treatment a reality.💡
#StandWithScience #IHI
🚀 #LupusGPT & #EasyLupus are currently offline as we continue improving them.
🛠️You thought they couldn’t get better? We know they can, & we’re making it happen.
In the meantime, for reliable, multilingual lupus information👉 https://lupus100.org/
💜Thanks for your support!
🎥 Missed our @SLEuroSociety #ELM2026 Recap Webinar?
🤩 Watch it now!
https://www.youtube.com/watch?v=Bw5Iptu-ZNc
🌟 PAN members share key takeaways, and experts explain the latest on lupus in short, patient-friendly videos.
More coming soon!
So proud to see #LupusGPT published in @TheLancetRheum
Huge credit to @LupusEurope Europe for leading such an inspiring, patient-driven initiative 👏
A privilege to contribute to this work 💜
🔗
LupusGPT: an AI-driven information model for patients with systemic lupus erythematosus
Systemic lupus erythematosus (SLE) is a chronic autoimmune multisystem disease affecting more than 300 000 people in ...
www.thelancet.com
✅ Now that #LupusGPT is published in the Lancet #Rheumatology (LINK: https://doi.org/10.1016/s2665-9913(25)00370-4), I wonder whether you have previously tested the app itself. Ask it anything about #lupus, in any language and tell me what you think: https://www.lupusgpt.org/
🌍 This month in our #1Month1Study campaign, we highlight our “Living with systemic lupus erythematosus in 2020: a European patient survey”, published in Lupus Science & Medicine.
This large-scale study, conducted by Lupus Europe was led by Alain Cornet, Jeanette Andersen, Kirsi Myllys, Angela Edwards with the incredible support of Prof. Laurent Arnaud. The study analysed data from 4,375 patients across 35 European countries, providing one of the most comprehensive overviews of the burden of SLE in Europe from the patient perspective.
✅ Key findings include:
• A median diagnosis delay of 2 years, highlighting persistent gaps in early recognition.
• A high symptom burden, with a median of 9 symptoms per patient.
• Significant impact on education, employment, and daily functioning.
• Marked inequalities in access to care across countries.
📌 These data underline the importance of integrating the patient perspective into clinical practice, research, and health policy to improve outcomes in this complex disease.
doi.org/10.1136/lupus-2020-000469
😃 Stay tuned as we break down these findings throughout the month and explore what they mean for people living with lupus across Europe.
This study would not have been possible without the active support and dissemination of Lupus Europe National Members across Europe. A huge thank you to all National Members and to all who supported and disseminated the study, for making this possible for the lupus community.
0 CommentsComment on Facebook
🤔 What can kidney biopsies really tell us in lupus nephritis?
🔬 Kidney biopsy is a key tool in the diagnosis and management of lupus nephritis. It helps doctors understand what is happening in the kidneys and guides treatment decisions.
But… could it tell us even more?
📽️ In this short video, Prof. Brad Rovin explains how ongoing research is exploring new ways to get deeper and more precise information from kidney biopsies with the goal of improving how lupus nephritis is monitored and treated.
👉 Watch here: youtu.be/nyw0Ug-Uap0?si=gOF2F_AzaL_R-4tC
Don't miss out and visit the #ELM2026 playlist with all videos in the "Video on Demand" section of our website!
Explore Our Videos On Demand: A Window Into Lupus - Lupus Europe
www.lupus-europe.org
LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across Europe. We are a non profit independent organisation. We aim to support and emp...0 CommentsComment on Facebook
🌈 The right to health is a basic human right. Everyone must have access to the health services they need when & where they need them without 💶 hardship.
😔 30% of the global population is not able to access essential health services.
#StandWithScience #WorldHealthDay #WHD2026
0 CommentsComment on Facebook
🚀 #LupusGPT & #EasyLupus are currently offline as we continue improving them.
🛠️You thought they couldn’t get better? We know they can, & we’re making it happen.
In the meantime, for reliable, multilingual lupus information👉 lupus100.org/
💜Thanks for your support!
0 CommentsComment on Facebook
