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

 

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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):

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🔴 Tomorrow is #WO

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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Thank you so much for bearing with us. We’re experiencing some unexpected technical difficulties with Facebook Live in relation to the European Lupus Meeting (ELM) 2026 webinar due to air at 19:00 CET. The webinar is being recorded, and we will make sure it is shared with you as soon as possible. ... See MoreSee Less

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