This past weekend the six members of the Lupus Europe Board of Trustees plus Alan Cornet, Amy Somers and Zoe Karakikla-Mitsakou were supposed to meet face-to-face in Leuven, Belgium, but for reasons you can understand, this was not possible.

Thanks to understanding partners, children, roommates and dogs, we were able to have two full days of Zoom meetings.

During these two days, we: discussed the Lupus Europe Convention (you’ll hear more about that very soon): reviewed our (52!) Strategic Plan items: went over and updated our ideas and projects for Communications; made so many plans for meetings and calls regarding research, upcoming scientific events, the PAN and our sponsors; and shared any news that we have had from all of our members.

You probably recognize all the faces except one: Zoe Karakikla-Mitsakou. Zoe, (a Greek woman, living in England, who has a degree in psychology but also first-hand experience with lupus) has accepted to join Lupus Europe as a project manager. This was her first real work meeting with us, and we are so excited to be working with her!

The board members are still connecting with the country members to check up on how everyone is doing in these COVID times. So, don’t be surprised if you get an email from one of use asking to chat. We appreciated getting a live update on what is happening with Lupus Poland from Klaudia Kępa during our meeting.

This year Kirsi will be stepping down as Lupus Europe Trustee (but we are counting on her to remain involved with Lupus Europe as an experienced PAN member – we’re not letting her go just yet!). However, this means we are looking for members who are interested in taking their lupus work to a more international level: either as a trustee, or perhaps easier to start off, as a co-opt.
Contact any of the board members to ask about what either of those positions involve, and definitely ask what it’s like to work with all of us, it’s a good group!

Save the date! October 5th at 20:00 to 21:00 Paris time.

The Lupus Europe board will hold a webinar to update you on all these items. We look forward to seeing you all online!
Lupus Europe Board of Trustees

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

LUPUS EUROPE Uniting people with Lupus throughout Europe
Send