Lupus Europe is set to mark World Lupus Day with a webinar aimed specifically at young people living with lupus. The webinar, “Lupus and Youth: A Dialogue between the Lupus Europe Youth Group and a Young Rheumatologist,” is scheduled for the 10th of May at 19:00 CET.

Why This Webinar Matters

 

Lupus frequently affects people during their prime years. Openly discussing and addressing the unique challenges faced by young people with lupus is crucial for enhancing their quality of life and understanding of their condition. Lupus Europe recognises this need and is bringing the Lupus Europe Youth Group and a Young Rheumatologist together to foster a supportive dialogue.

 

What to Expect

 

The webinar will be led by the vibrant and knowledgeable Dr. Francesca Crisafulli from Italy. Co-leading the webinar will be members of the Lupus Europe Youth Group. Dr. Crisafulli, a young rheumatologist and lupologist, will offer her expert insights into the disease and answer questions from participants. This format encourages open communication between young lupus patients and the specialist. It also allows attendees to gain a deeper understanding of young peoples’ concerns and experiences.

 

Engaging Young Voices

 

Lupus Europe’s is committed to involving youth people in conversations around lupus. By dedicating this webinar to young voices, led by young voices, the specific concerns and perspectives of younger patients can be heard in their own voice. This is an event where young people with lupus can freely express their concerns, share their experiences, and openly discuss solutions with both peers and professionals.

 

How to Participate

 

Don’t miss the opportunity to participate! Register by sending an email to secretariat@lupus-europe.org. The webinar will be highly interactive. Participants will have the opportunity to engage directly with the Youth Group and the rheumatologist!

 

Final Thoughts

 

This webinar is not just an event, but a bridge connecting young lupus patients with experts. It is a rare chance to interact, ask important questions, and connect with others who understand the challenges of living with lupus as a young person.

 

Don’t miss out on this opportunity to be part of a meaningful conversation. Mark your calendar for May 10! Take the first step towards engaging with a community of young people committed to supporting other young people with lupus.

 

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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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