Stay Updated and Knowledgeable About Lupus Europe

Click here to subscribe

AI GPT Lupus europe

Lupus Europe – Info Centre

We want to share some key information and links that we found particularly relevant for people living with lupus in Europe. 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.

EULAR Recommendations

Read the EULAR Recommendations for the Management of SLE: 2023 Update

LEAF - Lupus Expert system for the Assessment of Fatigue

Go to the LEAF tool for an assessment and personalised recommendations on improving fatigue

ACT EU Initiative

The Accelerating Clinical Trials in the EU (ACT EU) initiative was launched by the European Commission, the European Medicines Agency (EMA), and Heads of Medicines Agencies (HMA).  Find out more by visiting the website

Do you know ERN ReCONNET

This is the European Reference Network responsible for lupus

Inflammatory RMDs and Cardiovascular Risk

Read the EULAR brochure on Rheumatic and Musculoskeletal diseases, including lupus, and Cardiovascular Risk

Inflammatory RMDs and Mental Health

Gain essential understanding with EULAR’s brochure on Rheumatic and Musculoskeletal Diseases, including lupus, and Mental Health

What are ERNs?

Find out about Patient Involvement in the ERNs

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

Voclosporin

Voclosporin has been approved by the European Medicines Agency (EMA) as an add-on therapy for the treatment of severe & active lupus nephritis in adults

Lupus reference tweets

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

VACOLUP Study

Learn about the Tolerance of COVID19 Vaccines in Lupus Patients

EULAR on Vaccination

Read the EULAR View-points on SARS-CoV-2 vaccination in patients with Rheumatic and Musculoskeletal diseases (RMDs)

Lupus Forum Website

Find out about the Lupus Forum, an educational website dedicated to the dissemination of the latest developments in the field of lupus. It provides continuing medical education to clinicians.

Do you know ERN ReCONNET

This is the European Reference Network responsible for lupus

Phase 2 Data on Litifilimab in CLE

Read about the Positive Phase 2 Data on Litifilimab in Cutaneous Lupus Erythematosus

Lupus Europe STRATEGIES

LUPUS EUROPE • Intro
LUPUS EUROPE • Intro
Feb 21, 2019
LUPUS EUROPE • Research
LUPUS EUROPE • Research
Feb 21, 2019
LUPUS EUROPE • Members
LUPUS EUROPE • Members
Feb 21, 2019
LUPUS EUROPE • Heard
LUPUS EUROPE • Heard
Feb 21, 2019

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
Author Avatar
LUPUS EUROPE
8 hours ago

🦋 We continue bringing you our #EULAR2026 congress recaps!

The third day was another intense day for Lupus Europe, with patient-led research, emerging science and important conversations about lived experience, as well as ongoing and potential projects to improve lupus care.

🧠 One of the highlights was Alain Cornet’s poster on mental health trajectories in lupus: “Mapping mental health trajectories in lupus: patient-identified inflection points and support opportunities from a European patient panel”.

Presented by Ricky Chotai on Alain’s behalf, this patient-led work explored how people living with lupus and mental health difficulties understand mental health across the lupus journey.

Yesterday, we already told you more about this poster and its key messages, in case you missed it!

🦠 On 5 June, we followed emerging science on the microbiome, and the Meet the EULAR Expert session “Management of joint involvement in systemic lupus” with Professor Edward M. Vital.

📊 Disease activity measurement in SLE was another important theme, especially how clinical targets can be better aligned with lived experience.

♀️ Menopause was part of the day’s conversations, highlighting the importance of asking about it routinely and recognising how hormonal transitions may shape symptoms and quality of life.

🌍 Across the day, one message kept returning: better lupus care needs science, but also communication, patient priorities and tools that help people say what matters most.

That is exactly why tools such as the Lupus Consultation Cards matter. They are available in 20 languages and help people prepare for their lupus appointments by organising symptoms, concerns and top questions in advance. Check them out here: www.lupus-europe.org/lupus-consultation-cards/

💬 We kept connecting these discussions with #LupusGPT and #EasyLupus, because access to understandable, reliable information before and after consultations is part of helping people take a more active role in their care.

🥳 And we celebrated Jeanette's birthday!

😃 Want to know more? Catch up on the latest insights from the congress in our #EULAR2026 Recap Webinar, which you can watch here: www.facebook.com/LupusEurope/videos/2035644043691260 ... See MoreSee Less

Image attachment
Image attachment
Image attachment
Image attachment
Image attachment
View on Facebook
· Share
Share on Facebook Share on Twitter Share on Linked In Share by Email
View Comments likes love 4 Shares: 2 Comments: 1

1 CommentsComment on Facebook

Author Avatar
LUPUS EUROPE
1 day ago

😃 Last week at #EULAR2026, we presented POS0246-PARE, “Mapping mental health trajectories in lupus: patient-identified inflexion points and support opportunities from a European patient panel”.

The poster was presented by Ricky Chotai, Lupus Europe Board Member, on behalf of Alain Cornet, Lupus Europe Finance Lead & Organisation Coach, and lead author of this work.

✅ This patient-led qualitative work explored how people living with lupus and established, currently stable mental health difficulties understand the trajectory of mental health across the lupus journey.

‼️ Based on our patient panel conducted in Portugal with 8 adults living with lupus, the work identified key moments when support may matter most: diagnostic uncertainty, early disease phases, fluctuating symptoms, and communication with healthcare professionals.

🔴 One of the key messages is clear: mental health in lupus should not be seen only as an isolated symptom or crisis. It can be shaped over time by interactions with uncertainty, communication, and care structures.

The findings point to practical opportunities for support, including earlier acknowledgement of mental health concerns at diagnosis, normalising mental health discussions in lupus care, clearer communication during periods of uncertainty, peer support, and integrated psychosocial support throughout the disease course.

💫 Congratulations to Alain Cornet for this outstanding poster and to all authors: Zoe Karakikla-Mitsakou, Jeanette Andersen, Ricky Chotai, and Alain Cornet.

Read the abstract:
distribution-congress.eular.org/from.storage?image=15rRXWmdOAJ77zPlkD-rQtl85j9jAymUnt6XfjsO2C9rls... ... See MoreSee Less

😃 Last week at #E
View on Facebook
· Share
Share on Facebook Share on Twitter Share on Linked In Share by Email
View Comments likes 7 Shares: 1 Comments: 0

0 CommentsComment on Facebook

Author Avatar
LUPUS EUROPE
2 days ago

💜 Thank you to everyone who attended our EULAR 2026 Recap Webinar and joined us to look back at one of our most exciting congresses in recent years.

🤩 #Eular2026 has been intense, inspiring and full of moments we will remember.

Over the Congress, Lupus Europe contributed to and followed an incredible amount of work:

✅ 7 presentations as speakers
✅ 3 sessions chaired
✅ 66 sessions attended
✅ 318 presentations followed
✅ All the interviews you have been able to see in this webinar

But it is not only about numbers.

🌟It is also about the people behind them: the commitment, the humour, the hugs, the shared tiredness, the late nights, the conversations between sessions, and the spirit of this amazing Lupus Europe family.

What makes our work possible is not only the support we receive from our community, partners and friends.

🥰 It is also the energy, attitude, and generosity of our volunteers, who give their time, expertise and heart to Lupus Europe. ... See MoreSee Less

Play
View on Facebook
· Share
Share on Facebook Share on Twitter Share on Linked In Share by Email
View Comments likes love 13 Shares: 4 Comments: 0

0 CommentsComment on Facebook

Author Avatar
LUPUS EUROPE was live.
2 days ago

EULAR 2026 Recap Webinar ... See MoreSee Less

PlayEULAR 2026 Recap Webinar
View on Facebook
· Share
Share on Facebook Share on Twitter Share on Linked In Share by Email
View Comments likes love 14 Shares: 2 Comments: 1

1 CommentsComment on Facebook