Alain CornetDear Members, You might have received a mail from PatientView, seeking input to their study on the corporate reputation of the pharmaceutical industry in 2015— from the perspective of patient groups. We also know that some of you have not received it, and would be interested in taking part. We therefore relay the information so […]
Alain CornetOur first patient stories have arrived in our inbox. What a treat to read and something we look forward to sharing with you all in the near future. We are still looking for further contributions so, if you’re wondering what to do with all that spare time over the holidays (and beyond), don’t worry, the […]
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 […]
✅ Happy to share that we have just published #LupusGPT... in the Lancet #Rheumatology 👍
Check the post below by @LupusEurope for the link 🔓
💥 KABOOM!
Our #LupusGPT work is now published in @TheLancetRheum‼️
🏆 A big moment for LupusGPT, but also for what can happen when patient voice is built in from the start, not added at the end.
Free. Multilingual. Valid information on lupus
https://doi.org/10.1016/S2665-9913(25)00370-4
🔊Don’t miss this new @eular_org PARE podcast episode exploring lupus in Ghana and patient-led impact in Africa.
🥰Proud to see it hosted by our Chair, @Jeanette_Lupus, who is also Chair of iPARE, with patients leading the conversation 👏🏻
🎧New EULAR PARE podcast episode!
✨Explore how patient advocates in Ghana & South Africa are driving innovation, inclusion, and real impact in rheumatology across the global PARE community.
👉Spotify https://pulse.ly/e3qgvrga4c Apple Podcasts https://pulse.ly/1o4lj04vs9
#eularPARE
🦋 Turn to your association for support.
🇪🇺There are many orgs across Europe that can help you & your child cope with #lupus.
Look for the one closest to you: https://f.mtr.cool/svytiwdruh
More, at #Lupus100 & #LupusGPT https://f.mtr.cool/ciwjiugezi https://f.mtr.cool/jkzxxpveyr
#WORDDAY2026
🍏 A well-balanced diet, with plenty of fruits, vegetables and whole grains, is key for #lupus patients.
🦋 The only specific diet that has been proven to improve #lupus activity and symptoms is the Mediterranean diet.
More ℹ️ on #Lupus100 https://f.mtr.cool/ndyadzsxxw
#WORDDAY2026
UV light could cause a flare➡️ it is advisable that patients avoid it.
Always wear 🌞protection when outdoors.
Even though skin manifestations may appear more frequently on the face, protective measures should be applied to all exposed areas
https://f.mtr.cool/qzqdhiyewe
#WORDDAY2026
💊Apart from pharmacological treatment, other non-pharmacological measures can help in #lupus management.
🏃Did you know exercise has been shown to improve SLE symptoms like #fatigue?
More at #Lupus100 https://f.mtr.cool/tdmxzdwibs
Also, follow our exercise programme!
#WORDDAY2026
#Lupus might sound scary at first, but the diagnosis doesn't mean your child will not be able to have a normal life.
Talk to your doctor about infection prevention & self-care measures.
Find reliable information on #Lupus100 https://f.mtr.cool/yhycnkhsny in your language
#WORDDAY2026
We are very proud to share that LupusGPT has now been published in The Lancet Rheumatology, one of the world’s leading medical journals in rheumatology.
For us, this is not only about a publication. It is about what LupusGPT stands for.
LupusGPT is free. It is patient-led. And it was built to help people living with lupus find reliable, accessible information in almost any language.
It began with a simple but important question: what could become possible if patients, clinicians, and digital experts truly worked together from the start?
That question was first opened up in a fishbowl discussion at the European Lupus Meeting 2024 on how the lupus community could get the best, but not the worst, out of AI. From there, LupusGPT was shaped through the care, intelligence, and effort of many people: volunteers, patient testers, clinicians testing across languages, people who gave feedback, and people already helping us share it with patients in clinics, organisations, and communities.
This publication matters because it shows that patient-led innovation belongs in the scientific world too. It shows that when patient voice is not added at the end, but built in from the start, something real can grow.
A heartfelt thank you to all authors: Zoe Karakikla-Mitsakou, Alain Cornet, Jeanette Andersen, Sarah Dyball, Cristiana Sieiro Santos, Daniel Guimarães de Oliveira, and Laurent Arnaud. Special thanks also to Daniel Guimarães de Oliveira for the thought, care, and belief he brought to this work, and to Professor Laurent Arnaud for his outstanding support, steadiness, and guidance.
And above all, thank you to everyone in the Lupus Europe community who keeps showing us why this matters.
LupusGPT. Free. Multilingual. Patient-led. And now part of the scientific record.
doi.org/10.1016/S2665-9913(25)00370-4
Read it for free now! You only need to register (registration is completely free and takes 1')
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🚨 Today is #WORDDAY2026! Which stands for WOrld Young Rheumatic Disease Day.
🌍 Through this global event, we can spread the word that children and young people get rheumatic diseases like lupus, too.
‼️ It is estimated that around 15-20% of #lupus patients are children, although it is rare that a child develops lupus before 5 years of age.
As with adult patients, the cause of lupus remains unknown, and there is a great choice of treatments to keep the disease under control.
🔴 On average, it takes nearly 6 years for people with lupus to be diagnosed. This delay in diagnosis, and therefore in treatment, can have an impact on the prognosis and quality of life of patients; this includes kids.
😰 The moment your child gets a diagnosis might be overwhelming for you. This feeling of overwhelm can and does go away with time and with access to the right information.
👉 Remember: it is impossible to learn everything about #lupus overnight! Your child's doctor is the best source of information.
Apart from pharmacological treatment, other non-pharmacological measures can also help in lupus management.
📷 Take a look at the images we are sharing today to learn about these non-pharmacological measures and share them with your community to help us raise awareness.
🐺 Lupus can seem scary at first. Remember that you are not alone and that you are going to do a great job!
Turn to your lupus association for support.
🤗 There are many organisations across Europe that can help you and your child cope with the disease.
More information on #SLE in children at #Lupus100: f.mtr.cool/oklkpqamyu
For more information on WORD Day, you can visit World Young Rheumatic Diseases Day - WORD Day
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🔴 Tomorrow is #WORDDAY2026!
🦋 And we will be sharing tips and information on how #lupus can affect children.
Help us raise awareness, which is key for an early diagnosis & a quick referral to a specialised paediatric rheumatologist.
Share our posts and follow the World Young Rheumatic Diseases Day - WORD Day campaign.
More information on lupus in children at #Lupus100 (19 languages):
f.mtr.cool/hnfukbkwdf
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Watch this Lupus Europe Webinar on the European Lupus Meeting (ELM) 2026, As Viewed by Lupus Europe's PAN Members & Volunteers!
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