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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🛑 Lupus is a complex autoimmune chronic condition with symptoms and treatments that can potentially impact one’s sexual life and, consequently, quality of life.

💥 Symptoms like pain, fatigue, or joint stiffness can make physical intimacy challenging, while emotional factors such as anxiety, depression, and changes in body image can further complicate sexual well-being.

🚨In addition to lupus, overlapping conditions such as Sjögren’s disease and antiphospholipid syndrome could also be a barrier to a fulfilling sexual life, as the former can cause vaginal dryness and discomfort during intercourse, and the latter can increase the risk of complications that may affect overall well-being and intimacy.

💊 Furthermore, certain medications used to manage lupus and related conditions could potentially have adverse effects on sexual health (corticosteroids, for instance, can lead to weight gain, mood swings, and decreased libido).

‼️Although sexual dysfunction is highly prevalent among patients with autoimmune rheumatic diseases (AIRD), it remains under-recognised, under-discussed & under-treated in routine clinical care.

🔊 And that is why, on this #EuropeanSexualHealthDay, we want to raise awareness about the importance of addressing sexual health as a vital component of overall well-being
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🛑 Lupus is a compImage attachmentImage attachment

📣 Upcoming ERN RECONNET Webinar on Lupus Nephritis!

➡️ “What is the added value of triple therapy in lupus nephritis” ⬅️

🗓 11 March 2026
⏰ 4:00 p.m. CET (i.e., Paris time).

🎙 Speaker: Dr Antonis Fanouriakis
🎙 Moderators: Prof. Dr Matthias Schneider & Zoe Karakikla-Mitsakou, General Secretary of Lupus Europe.

Lupus nephritis remains one of the most serious complications of systemic lupus erythematosus, and treatment strategies continue to evolve as new evidence emerges.

🔎 This webinar will explore:
•⁠ ⁠The scientific rationale for triple therapy.
•⁠ ⁠Current clinical evidence.
•⁠ ⁠What this may mean for outcomes in lupus nephritis.

Whether you are a healthcare professional, researcher, or patient, this session is not to be missed!

Register now! us06web.zoom.us/webinar/register/WN_41Lc9osLQ6m7nOuJGGWnHw#/registration
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📣 Upcoming ERN RE

🚨 New publication alert: EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement- 2025 update.

‼️ According to Lupus Europe's 2024 Swiss knife survey:

1️⃣ Kidney involvement remains one of the most worrying and impactful lupus manifestations for many people in Europe.
2️⃣ Kidney problems are among the manifestations causing the greatest long-term concern.
3️⃣ Only a small minority of patients report long-term stability without flares.
4️⃣ Patients want clearer goals, better communication, and care that looks beyond lab values alone.

That is why the 2025 update of the EULAR recommendations for the management of systemic lupus erythematosus with kidney involvement is such an important step forward.

✅ These updated recommendations reinforce several key messages that matter to patients:
- Early and regular monitoring of kidney involvement.
- Timely kidney biopsy when needed.
- Clear treatment targets to preserve kidney function.
- A strong focus on combination therapies when appropriate.
- Long-term kidney protection, not only short-term control.

🌟 We are especially proud that our Chair, Jeanette Andersen, was part of the international task force that developed these recommendations, ensuring that the patient perspective was present at the table.

You can read the EULAR Recommendations here: ard.eular.org/article/S0003-4967(25)04412-7/fulltext

And the Swiss Knife Survey here: www.sciencedirect.com/science/article/pii/S1568997225000989
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🚨 New publication
LUPUS EUROPE Uniting people with Lupus throughout Europe
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