Alain CornetWorld Lupus Day is just one week away… The World Lupus Federation which encompasses the LFA, LUPUS EUROPE and other world Lupus organisations, has set up a website specially dedicated to World Lupus Day. On the site you can find out more about different activities throughout the world, download a Lupus toolkit and sign the petition […]
Alain CornetHello again – now a note about day 2 at the IAPO GPC 2016! (International Alliance of Patients Organisations) Global Patients Conference 2016) Sunday morning was devoted to UHC (Universal Health Coverage). We had two presenters, from the WHO (World Health Organisation), Nittita Prasopa-Plaizier and Mario Ottigilo. UHC is a global project with the goals : health […]
Alain CornetThis week the training begins… dedicated to Denmark – click on Run with Andreas for more.
Alain CornetWe have a new page on the LUPUS EUROPE blog, in honour of an inspiring young man who has decided to run with and for LUPUS EUROPE. To follow his story each week simply click on the tab ‘Run with Andreas’. Week 0/24 Greatest life Challenge, till the next one! A few months ago […]
Alain CornetLUPUS EUROPE’s annual convention will be held in Würzburg, Germany this year from 28th September (afternoon welcome and registration) – 02 October 2016 (closing after morning sessions). The German Lupus Association is celebrating their 30th anniversary this year and is looking forward to welcoming us to Germany for the occasion. More information coming soon…
Alain CornetHI! from the IAPO (International Alliance of Patients Organisations) Global Patients Conference 2016! I’m representing Lupus Europe at this amazing conference! From www.iapo.org.uk “150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world.” My objective here was to represent Lupus Europe […]
Alain CornetPatients take universal health coverage into their own hands 150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world. Patients’ groups, academics and health organisations will meet at the 7th Global Patients Congress, from 9-11 April, to share innovative […]
Alain CornetIn one month’s time it’s World Lupus Day. For the occasion the World Lupus Federation (which reunites the Lupus Foundation of America, LUPUS Europe and other Lupus federations around the world) has set up a petition, addressed to the World Health Organisation, requesting that Lupus become a priority, enabling patients to be diagnosed and treated as quickly […]
Alain CornetThis year, we want World Arthritis Day (WAD) to be more powerful than ever! To do this we are asking people to share their stories about how they have taken action to live their life to the fullest with a rheumatic and musculoskeletal disease (RMD) in order to provide greater education to people both within the RMD community […]
Alain CornetIt is starting! After intense preparation, the second LUPUS EUROPE patient panel is now taking place in Brussels. From Friday to Sunday, nine patients from all over Europe will be discussing the theme of living with lupus, with a specific focus on treatment day after day. Several focus groups and workshops have been scheduled, and […]
🌍 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!
0 CommentsComment on Facebook
