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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🎉 In six days, we will be at #EULAR2026!

If you haven't heard of EULAR before, it's Europe's largest rheumatology congress 😃.

🌍 Every year in June, EULAR brings together over 13,000 researchers, clinicians, and patient advocates from more than 130 countries, with 170+ scientific sessions.

🦋 Lupus Europe will be there, and we'll be bringing you the latest on lupus from the congress floor.

🎙️ Not only that! Lupus Europe will be an active part of the congress! As in previous years, some of our Board and PAN members will be presenting posters and abstracts, chairing sessions, and taking the stage as speakers.

👀 Stay tuned!
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𝗟𝘂𝗽𝘂𝘀 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻 𝗖𝗮𝗿𝗱𝘀: a 𝗻𝗲𝘄 𝘁𝗼𝗼𝗹, 𝗿𝗲𝗰𝗼𝗺𝗺𝗲𝗻𝗱𝗲𝗱 𝗯𝘆 𝗹𝘂𝗽𝗼𝗹𝗼𝗴𝗶𝘀𝘁𝘀❗

✅ When doctors recommend a tool, it is because they see how it can support real conversations in the clinic.

👩‍⚕️ In this video, Dr Sarah Dyball introduces the Lupus Consultation Cards.

🤝 These cards were created through collaboration between doctors and patients to help people living with lupus 𝗽𝗿𝗲𝗽𝗮𝗿𝗲 𝗳𝗼𝗿 𝘁𝗵𝗲𝗶𝗿 𝗺𝗲𝗱𝗶𝗰𝗮𝗹 𝗰𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻𝘀.

They can support patients in:
✔️ organising what they want to discuss
✔️ identifying their main concerns
✔️ preparing their top questions
✔️ making the consultation more focused

😃 For doctors, the cards can help them understand faster what matters most to the person in front of them.

💜 A simple tool. A better consultation.

👉 Download or fill in the cards online and take them to your next doctor's appointment and #MakeItCount:

www.lupus-europe.org/lupus-consultation-cards/
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☹️ Does joint pain affect your daily life? You are not alone.

💁‍♀️ According to Lupus Europe’s 2024 Swiss Knife Survey, joint pain and/or swelling were reported by 𝟳𝟮.𝟴% 𝗼𝗳 𝗽𝗲𝗼𝗽𝗹𝗲 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗦𝗟𝗘. It was also one of the symptoms 𝗺𝗼𝘀𝘁 𝗹𝗶𝗸𝗲𝗹𝘆 𝘁𝗼 𝘀𝘁𝗼𝗽 𝗽𝗲𝗼𝗽𝗹𝗲 𝗳𝗿𝗼𝗺 𝗹𝗶𝘃𝗶𝗻𝗴 𝗹𝗶𝗳𝗲 𝘁𝗼 𝘁𝗵𝗲 𝗳𝘂𝗹𝗹𝗲𝘀𝘁, reported by 44.6% of respondents.

🦋 #Lupus is a systemic autoimmune disease that can affect different parts of the body, including the joints.

💜 Today is World Aimmune Autoinflammatory Arthritis Day, also known as #AiArthritisDay.
It is a day to raise awareness of autoimmune and autoinflammatory diseases, such as lupus, that can involve joint inflammation.

❌ But lupus is not “just joint pain”.

‼️ Lupus can affect the whole body. That’s why it is important that symptoms such as pain, fatigue, swelling, stiffness, and their impact on daily life are discussed clearly during medical appointments.

💬 To help with these conversations, take a look at the 𝗟𝘂𝗽𝘂𝘀 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻 𝗖𝗮𝗿𝗱𝘀: a practical tool to help people living with lupus prepare for appointments and explain what matters most to them.

Inspired by NVLE and in collaboration with ERN RECONNET, these cards are available in 19 languages (more to come!).

📥 Download them here and make your consultation count: www.lupus-europe.org/lupus-consultation-cards/

#MakeItCount
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☹️ Does joint pa

🗨️ Lupus affects men, too! And its impact can be different from women’s, both physically and mentally.

‼️ From symptoms to how it is experienced and expressed, men living with lupus may face challenges that are not always recognised or addressed in consultation.

💁‍♂️ That's why we have created the Lupus Consultation Cards adapted for men: designed to help prepare for consultations, prioritise concerns, and make sure what matters most is addressed.

🌍 Available in 18 languages!
📥 Download for free and make your consultation count: www.lupus-europe.org/lupus-consultation-cards/

🟣 #MakeItCount
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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