Quality of healthcare?

What does quality of healthcare mean for you? Take the EPF survey! Deadline: 31st May 2016. The survey is aimed at patient representatives: primarily individual patients, their family members or informal carers, and patient organisation representatives across the EU. You do not need in-depth knowledge or experience on quality of care to complete the survey! There […]

Introduction from a new board member

In September, during the LUPUS EUROPE convention, we were delighted to welcome Jeanette Andersen to the board. She has written a little introduction for those who don’t already know her from her work in LUPUS EUROPE and Young PARE. “I was diagnosed with SLE in 2011, although I had had symptoms of the disease since […]

The EUPATI toolkit has been launched

A Toolbox of presentations, videos, articles and other resources on patients’ involvement in development of new drugs for treatment was launched on January 27th. The EPF flagship project, EUPATI (the European Patient Academy on Therapeutic Innovation), has lanuched its Toolbox in 7 languages – read more on what fruits this will bring to patients and the research and regulatory […]

EPF Regional Advocacy Seminar

  Do you have members in Belgium, the Netherlands, Luxembourg or Germany?  This year’s EPF Regional Advocacy Seminar is open to patient representatives from these countries. Make sure you share this opportunity with them! This year’s Seminar is entitled “Getting the patients’ message across to the national and European level”. Participants will take part in […]

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons

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')
... See MoreSee Less

We are very proud to

🚨 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
... See MoreSee Less

Image attachment
Image attachment
Image attachment
Image attachment
Image attachment

🔴 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
... See MoreSee Less

🔴 Tomorrow is #WO

Watch this Lupus Europe Webinar on the European Lupus Meeting (ELM) 2026, As Viewed by Lupus Europe's PAN Members & Volunteers!

... See MoreSee Less

0 CommentsComment on Facebook