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 […]
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 […]
✅ 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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