On this page, we want to share some key information and links that we found particularly relevant for people living with lupus in Europe. These can be recent scientific publications, information, news from our members, old articles that are still very valuable today. we will update this selection as new articles pop up, so come back regularly…

While we do our utmost to select credible sources of information and quality publications, the articles and links reflect the views of their authors rather than of LUPUS EUROPE.

LATEST LUPUS EUROPE NEWS

See our latest Blog articles, initiatives or projects.

Living with lupus in 2020 - SURVEY PUBLISHED

Thank you to the 5922 respondents

Hydroxychloroquine Dosing survey

Our survey on HcQ dosing, retinopathy and adherence is published in Lupus Science and medicine!

Anifrolumab

Anifrolumab has now been approved by the European Medicines Agency (EMA) as an add-on therapy for the treatment of active, moderate to severe SLE

Lupusreference TWEETS

Prof. L. Arnaud is very active on twitter, often with recent news in 1 slide

EULAR on Vaccination

Read the updated EULAR recommendations for vaccination of people with an autoimmune inflammatory rheumatic disease

WANT TO MAKE A POSTER?

See attached Simon Stones slides explaining how to make a poster for a scientific event!

COVID impact on rare diseases patients

look at the attached infographic made by EURORDIS based on 6945 answers

This is Living

Go to the campaign's autoimmune conditions webpage!

Do you know ERN ReCONNET

This is the European Reference Network responsible for lupus

VACOLUP Study

Learn about the Tolerance of COVID19 Vaccines in Lupus Patients

EULAR 2021

Read Our Top Takeaways from EULAR 2021

EULAR 2021

Summary of Key Abstracts on Lupus Treatment - by Prof. Arnaud

What are ERNs?

Find out about Patient Involvement in the ERNs

Live Facebook Feed

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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