Hello! My name is Ida, and I’m here to share my incredible journey through the EUPATI Open Classroom, an initiative by the European Patients’ Academy of Therapeutic Innovation (EUPATI). For me, EUPATI training was a ride filled with challenges, dedication, and a newfound understanding of the medical world.

 

Let me be honest; diving into the EUPATI Open Classroom was challenging. It demanded time, effort, and a willingness to embrace a whole new language – the language of medical research. The EUPATI course required substantial dedication. It wasn’t just about reading materials or participating in online events; it was about immersing yourself in an entirely new realm of knowledge. Picture this: medical jargon, complex terms, and a professional language that doctors and researchers use daily.

 

As I familiarised myself with this new language, I found myself understanding the world of medical research better. Suddenly, concepts that once seemed foreign became clear, and the importance of learning more about research for my work as a Patient Advisory Member (PAN) for Lupus Europe became undeniable. Learning these intricacies not only enhanced my knowledge, but also deepened my motivation.

 

My EUPATI story didn’t unfold smoothly; health issues threw a wrench into my plans. But here’s where EUPATI stood out – their understanding and support were great. When I couldn’t complete the course in one year due to health concerns, they allowed me to postpone. I now have two modules left, the final training, and the final test. With the support of EUPATI, I am continuing my journey. Slowly but steadily, I will earn my last credits, absorb new knowledge, and prepare for the final face-to-face training and test.

 

In hindsight, despite the challenges, I can confidently say it is worth it. The EUPATI Open Classroom has already transformed me. Yes, it demands focus, dedication, and countless hours of learning, but the rewards are immeasurable. So, to all of you out there considering this journey, here is my advice: be prepared to invest your time and energy. Embrace the difficulties, because on the other side, there is a world of understanding waiting for you. The EUPATI Open Classroom might not be easy, but it is undeniably transformative. It’s a unique opportunity to empower yourself, to comprehend the intricacies of medical research, and to contribute meaningfully to the betterment of patient experiences worldwide.

 

With determination and the right support, you can conquer the challenges and emerge stronger, wiser, and more empowered than ever before. Here’s to your journey of discovery and enlightenment at the EUPATI Open Classroom!

 

By Ida Daiva Povilaite, Lupus Europe PAN and Board Member

 

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