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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

Country Level Data
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

Country Level Data
Living with Lupus in 2024

Lithuania

Norway

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Living with Lupus in 2024

Norway

Poland

Country Level Data
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

Lupie

Lupie-English

Lupie English

Lupie-French

Lupie French

Lupie-Dutch

Lupie Dutch

Lupie-German

Lupie German

Live Twitter Feed

Lupus Europe Follow 7,164 4,260

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

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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Lupus Europe @LupusEurope ·

29 Jan 2016829355943457261

🚨 𝗟𝗮𝘀𝘁 𝗰𝗵𝗮𝗻𝗰𝗲❗

🙏 Help Prof @Lupusreference and his team validate the Lupus Brain Fog Severity Scale.

✅ Make lupus brain fog measurable.

⏱️ 5 minutes of your time can make a huge impact!

https://lupusresearch.limequery.org/337533?lang=en

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Retweet on Twitter Lupus Europe Retweeted

Laurent ARNAUD @Lupusreference ·

24 Jan 2014991359107641699

✅ #COGNILUP is based on a series of 12 tests, assessing various aspects of #cognition relevant to the specific context of #Lupus and tailored to detect minor alterations. A series of 12 challenges to unlock the secret of the 12 golden butterflies, to improve QoL in #SLE 🦋

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Lupus Europe @LupusEurope ·

27 Jan 2016165381350584595

🚨Alcohol, recreational drugs & lupus: what are the risks?

Young people face real-life decisions that can affect their health. This Youth Group webinar offers clear, evidence-based information to help support safer, informed decisions.

Email secretariat@lupus-europe.org to join

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Retweet on Twitter Lupus Europe Retweeted

Laurent ARNAUD @Lupusreference ·

23 Jan 2014605027113865576

✅ Because #neuropsychological testing is difficult to get almost everywhere in the world ⬇️ I'm developing #COGNILUP, a free online platform with multi-lingual capabilities, enabling sensitive cognition testing of #lupus patients everywhere in the world 🌏🌎🌍

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Retweet on Twitter Lupus Europe Retweeted

Laurent ARNAUD @Lupusreference ·

24 Jan 2014988557899710710

✅ One more week before the end of the validation phase of the #LBFSS #brainfog score for #Lupus. If you have #SLE and have not participated yet we definitely need your help ⬇️ 15 minutes only to help us improve the recognition of #cognitive manifestations 🧠

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Live Facebook Feed

🚨 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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😃 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! 👇

Alcohol & Drugs - Lupus ... See MoreSee Less

😃 Thank you to al

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LUPUS EUROPE was live.

... See MoreSee Less

Alcohol & Drugs - Lupus

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4 CommentsComment on Facebook

🚨 𝗟𝗮𝘀𝘁 𝗰𝗵𝗮𝗻𝗰𝗲❗

🙏 Help Prof Laurent Arnaud and his team validate the Lupus Brain Fog Severity Scale.

✅ Make lupus brain fog measurable.

⏱️ 5 minutes of your time can make a huge impact!

lupusresearch.limequery.org/337533?lang=en ... See MoreSee Less

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View Comments likes 6 4 Comments: 0

0 CommentsComment on Facebook