Alain CornetInput is being sought from European Patients’ Forum members on the Patient Empowerment Charter. The deadline for feedback is 10th January 2016. For more information please click here. The European Patients’ Forum has also put together its draft position paper on Cross Border Healthcare. Feedback is invited from member groups. More information here.
Alain CornetThe final dates have been set for the Patient Panel. The Patient Panel is seeking participants and will take place in Brussels from March 11-13th 2016. This is a rare and unique opportunity for patients to participate in a truly worthwhile experience. All costs, travel, accommodation and meals are reimbursed. For further information, please click […]
Alain CornetLupuzorTM enters phase III Press release from the CNRS Paris, 15 December 2015 LupuzorTM may become the first specific and non-immunosuppressant therapy for lupus, a disabling autoimmune disease that is currently incurable. Discovered by Sylviane Muller’s team in the CNRS Immunopathologie et Chimie Thérapeutique laboratory, in Strasbourg, this peptide is the subject of a CNRS […]
Alain CornetA UNIQUE OPPORTUNITY to meet people living with lupus from around Europe LUPUS EUROPE is looking for people interested in participating in its 2016 Patient panel which will address the burden of living with lupus, with a particular focus on treatment day after day. The questions discussed by the group will cover the realities […]
Alain CornetAt the recent American Congress of Rheumatology in San Fransisco this week, we received fantastic news on two promising trial results. 1. AstraZeneca Phase IIb Anifrolumab 300 mg showed positive results, where it produced a response in 34.4 percent of patients after 169 days of treatment and this rose to more than 50 percent after […]
Alain CornetThis is just a reminder that the December deadline for patient stories is fast approaching. If you are a member of one of our patient organisations and want to share your story please send it to katharine@lupus-europe.org
Alain CornetEPF is launching a second consultation on a draft position on defining and measuring access to healthcare. The position paper was developed with the working group on access. The first consultation was held in September/October. Lupus Europe is involved in this working group and your input to the consultation would be much appreciated if you […]
Alain CornetThe European Patients’ Forum launched their Patient Empowerment Campaign earlier this year. Here is the video accompanying the campaign and showing what patient empowerment might mean for different people.
Alain CornetUntil the end of the month, the British Medical Journal has a special free access area with a focus on Lupus. Please click here to view.
Alain CornetVisit the LUPUS EUROPE YouTube channel and see the videos made during last year’s Patient Panel in Brussels!
🌍 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.
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🤔 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!
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