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Swiss Knife Survey 2024

Living with lupus

Living-with-lupus1

Swiss Knife Survey 2024

Coping with systemic lupus erythematosus in patients’ words

Living with lupus in 2020

Lupus-3

Association of diagnosis delay and disease activity with burden on Daily life

Living-with-lupus1

20 Facts on living with lupus in 2020

Factsheets

BELGIUM

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Belgium

BULGARIA

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Bulgaria

CROATIA

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Croatia

DENMARK

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Denmark

FINLAND

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Finland

FRANCE

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France

GERMANY

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Germany

ITALY

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Italy

NORWAY

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Norway

POLAND

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Poland

PORTUGAL

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Portugal

SPAIN

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Spain

Belgium

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Living with Lupus in 2024
Belgium

Bulgaria

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Living with Lupus in 2024

Bulgaria

Czech

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Living with Lupus in 2024

Czech Republic

France

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Living with Lupus in 2024

France

Germany

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Living with Lupus in 2024
Germany

Italy

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Living with Lupus in 2024

Italy

Lithuania

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Living with Lupus in 2024

Lithuania

Norway

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Living with Lupus in 2024

Norway

Poland

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Living with Lupus in 2024
Poland

Portugal

Country Level Data
Living with Lupus in 2024

Portugal

Spaom

Country Level Data
Living with Lupus in 2024

Spain

Country Level Data
Living with Lupus in 2024

UK

Patient Panel Reports

Lupus-1

Patient Panel I on Treatment

Lupus-2

Patient Panel II on the Burden of Living with Lupus

Lupus-3

Patient Panel III on Youth

Published Research

Convention Reports

Convention 2024 thumbnail

Convention Report 2024

2023-2

Convention Report 2023

Convention Report 2022

Lupus-rep2

Convention Report 2021

Lupus-rep1

Convention Report 2020

Liverpool

Convention Report 2019

Luvern

Convention Report 2018

Milano

Convention Report 2017

2016

Convention Report 2016

Consultation Cards

German

German Consultation Card

Consultation cards_ English new

English Consultation Card

Consultation cards_ Portuguese

Portuguese Consultation Card

Key Documents

Patient-doctor communication gap
What are my key concerns when I am having a lupus flare Results of a speed-shop at Lupus2022 meetings

Swiss Knife Survey 2024 – Two Questions on how people think about treatment burden, risk, and remission.

Lupie

Lupie-English

Lupie English

Lupie-French

Lupie French

Lupie-Dutch

Lupie Dutch

Lupie-German

Lupie German

Live Twitter Feed

Lupus Europe Follow 7,170 4,262

Lupus Europe is the umbrella association of currently 32 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.

Retweet on Twitter Lupus Europe Retweeted

Laurent ARNAUD @Lupusreference ·

13 Feb 2022373363151233511

✅ For the first time a colleague has tested #COGNILUP entirely, in order to provide me with feedback. After so many hours of hard work it feels truly amazing to see that everything is working well, from the test itself to the secure transfer of results to the physician 👍

Reply on Twitter 2022373363151233511 Retweet on Twitter 2022373363151233511 2 Like on Twitter 2022373363151233511 16 Twitter 2022373363151233511

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Matteo Piga @RMD_clinic ·

12 Feb 2021871406187684286

Could #anifrolumab be a game-changer for neuropsychiatric #Lupus? 🧠 💉

Our new review in @FrontiersIn dives into the clinical rationale and case-based evidence for targeting Type I Interferon in NPSLE patients.

🔗 https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2026.1750071/full

#SLE #NeuroImmunology

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Lupus Europe @LupusEurope ·

12 Feb 2021963539884212267

📣 Upcoming @ern_reconnet Webinar!

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

🗓 11 March
⏰ 4 p.m. CET (i.e., Paris).

🎙 Speaker: Dr Antonis Fanouriakis
🎙 Moderators: Prof. Matthias Schneider & Zoe Karakikla-Mitsakou.

Register https://us06web.zoom.us/webinar/register/WN_41Lc9osLQ6m7nOuJGGWnHw#/registration

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Lupus Europe @LupusEurope ·

9 Feb 2020906618053968376

🥰 Proud to see our Vice Chair & Secretary @AnnemarieS66 sharing her lived experience with cutaneous lupus for @ERN_Skin in the context of #RareDiseaseDay, helping raise awareness of skin involvement in #lupus.

https://jardin-ern.eu/patient-story/annemaries-story/

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Retweet on Twitter Lupus Europe Retweeted

Laurent ARNAUD @Lupusreference ·

7 Feb 2020030937074225424

✅ After ~200h of work, how far have I been able to take #COGNILUP?
➡️ Online platform to assess #cognition in systemic #Lupus
➡️ 12 different #neuropsychological tests with gaming
➡️ Assessment of stress, depression, anxiety, pain, fatigue sleep issues
➡️ Patient & doctor modes

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Retweet on Twitter Lupus Europe Retweeted

EULAR @eular_org ·

3 Feb 2018716124192387104

We are excited to share our newly released Scientific Programme for #EULAR2026, bringing together innovation, collaboration and the latest evidence shaping the future of rheumatology and patient care.

✨ Access the full programme: https://pulse.ly/3ldgscb7pq

#Rheumatology #Congress

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Lupus Europe @LupusEurope ·

5 Feb 2019351087057117640

🚨 New publication alert: @eular_org recommendations for the management of systemic lupus erythematosus with kidney involvement– 2025 update.

Why this matters from a patient perspective👇

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Lupus Europe @LupusEurope ·

2 Feb 2018369793506656472

😃 Thank you to all who attended our latest Youth Group webinar!

🌟 So many interesting questions were asked and addressed! Showing how important safe spaces arefor talking openly about lupus without judgment.

Did you miss it? Watch it here! 👇

https://www.facebook.com/LupusEurope/videos/1940376426515031

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Live Facebook Feed

🛑 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 ... See MoreSee Less

🛑 Lupus is a comp

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📣 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 ... See MoreSee Less

📣 Upcoming ERN RE

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🥰 Proud to see our Vice Chair & Secretary Annemarie sharing her lived experience with cutaneous lupus for ERN Skin in the context of #RareDiseaseDay, helping raise awareness of skin involvement in #lupus.

🙏Thanks to ERN Skin for helping us raise awareness of skin involvement in lupus.

💜And huge kudos to Annemarie for her tireless work and commitment to improving care and awareness for people living with lupus and skin involvement. We are grateful for everything you do!

Read her inspiring story now! ... See MoreSee Less

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🚨 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 ... See MoreSee Less

🚨 New publication

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