Alain CornetStene Prize Every year EULAR and the Standing Committee of PARE offer the Edgar Stene Prize for the best essay on a previously determined topic. The winner receives a prize money of EUR 1,000 is awarded during the Opening Plenary Session at the Annual EULAR Congress and is invited to the congress dinner. In addtion, […]
Alain CornetSAVE THE DATE 2nd EULAR Young PARE youth meeting Friday 21 October – Sunday 23 October 2016 Corsendonke de Linde, Retie, Belgium This email serves for you to block the dates in your calendar, for when our 2nd EULAR Young PARE youth meeting will take place. The location is Corsendonke de Linde, Retie, Belgium. Please share this email with […]
Alain CornetHere is a video featuring Claudine Goyens (who has also written a patient story for LUPUS EUROPE) who encourages us to submit our story for World Arthritis Day. For more information on World Arthritis Day and the stories, please click here. The deadline for submission of stories is 29th July 2016.
Alain CornetHere is an overview of the common World Lupus Day campaign compiled by the World Lupus Federation on the extent and spread of the joint World Lupus Day Campaign. Duane Peters, who has been coordinating the WLF campaign, has told us that the response received has been excellent, especially the results of social media efforts. News about the […]
Alain CornetAs part of our initiatives directed towards youth, trustee Jeanette Andersen, who is responsible for youth related work, has set up a LUPUS EUROPE YOUTH group on facebook. Here is what she has to say about the group. “A group for all young people (aged 18-35) with lupus in Europe. Whether you have a youth group […]
Alain CornetHere is a video extract from an interview with Anne Charlet, vice-chair LUPUS EUROPE, speaking to MedTech about her daughter living with lupus. [youtube https://www.youtube.com/watch?v=eeF5or2K168&w=560&h=315] You can see Anne’s full World Lupus Day interview here.
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 […]
🌍 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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