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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

Country Level Data
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

Country Level Data
Living with Lupus in 2024
Belgium

Bulgaria

Country Level Data
Living with Lupus in 2024

Bulgaria

Czech

Country Level Data
Living with Lupus in 2024

Czech Republic

France

Country Level Data
Living with Lupus in 2024

France

Germany

Country Level Data
Living with Lupus in 2024
Germany

Italy

Country Level Data
Living with Lupus in 2024

Italy

Lithuania

Country Level Data
Living with Lupus in 2024

Lithuania

Norway

Country Level Data
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

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 7,195 4,280

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

Lupus Europe @LupusEurope ·

22h 2032113514676953490

Prevention is key! There are many ways to take care of your kidneys:
1️⃣ Have an active life 🚶‍♂️ 🏃‍♀️
2️⃣ Don't smoke 🚭
3️⃣ Have a healthy diet 🥗 🍏
4️⃣ Check & control your blood sugar & blood pressure
5️⃣ Take appropriate fluid intake
6️⃣ Don't take NSAIDs regularly
#WorldKidneyDay

Reply on Twitter 2032113514676953490 Retweet on Twitter 2032113514676953490 2 Like on Twitter 2032113514676953490 2 Twitter 2032113514676953490

Lupus Europe @LupusEurope ·

23h 2032092231872413774

🚨 #Kidney disease is a silent illness. Getting to recognise its symptoms is key to getting an early diagnosis and preventing potential complications:

1️⃣ Urine changes (in frequency or colour)
2️⃣ Swelling in 🤲 🦶 🦵
3️⃣ Foamy urine
4️⃣ High blood pressure

#WorldKidneyDay

Reply on Twitter 2032092231872413774 Retweet on Twitter 2032092231872413774 2 Like on Twitter 2032092231872413774 0 Twitter 2032092231872413774

Lupus Europe @LupusEurope ·

12 Mar 2032052116773114021

‼️ Although #lupus nephritis remains one of the most serious complications for #SLE patients, early diagnosis and adequate treatment make remission possible in many cases.

✅ To achieve this, it is crucial that patients do not skip their routine check-ups.

#WorldKidneyDay

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Lupus Europe @LupusEurope ·

12 Mar 2032030818638364866

🚨 It is estimated that about 40% of #SLE patients will suffer from #lupus nephritis: one of the most dangerous & frequent complications of SLE- Carmona L. et al.

✅ Routine check-ups and early detection of symptoms are key to an early diagnosis.

#WorldKidneyDay

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Retweet on Twitter Lupus Europe Retweeted

Laurent ARNAUD @Lupusreference ·

11 Mar 2031773973952786861

✅ The final version of the #SLAKE paper, the Systemic #Lupus Assessment of essential Knowledge instrument, is now published online at https://doi.org/10.1093/rheumatology/keaf649
Thank you all for your support and your participation 👍

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Retweet on Twitter Lupus Europe Retweeted

Laurent ARNAUD @Lupusreference ·

8 Mar 2030591699194421625

✅ Key messages from the 'early #Lupus diagnosis' fishball at #ELM2026
- Early diag particularly important for non-severe patients (because severe often diag quickly)
- #Redflags/education for GPs is key
-Access to care/rethinking pathways
-Role for biomarkers (e.g. ANA+IFN)

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Lupus Europe @LupusEurope ·

12 Mar 2031993697810649440

🦋 #Lupus is a chronic autoimmune disease that can affect any organ or tissue in the body.

🆘 One of the most serious manifestations of systemic #lupus erythematosus is lupus nephritis.

Today is #WorldKidneyDay, and we support #KidneyHealthForAll campaign by @worldkidneyday

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Lupus Europe @LupusEurope ·

10 Mar 2031309921245970698

🇵🇹What a week at #ELM2026!
You may have noticed Lupus Europe was quiet on social media… simply because we were fully involved in the meeting.
🔹12 Fishbowl Chairs
🔹9 abstracts supported
🔹Our Chair, @Jeanette_Lupus, at opening & closing
🔹6 co-chairs
🔹3 session interventions

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Live Facebook Feed

✅ For all questions about #lupus, remember you can visit #LupusGPT & #EasyLupus: multilingual AI tools developed by Lupus Europe, powered by 🔝sources including #Lupus100.

🌐 Visit lupusgpt.org/ & easy.lupusgpt.org/ for reliable answers to your lupus questions! ... See MoreSee Less

✅ For all question

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🔴 Although lupus nephritis remains one of the most serious complications for SLE patients, early diagnosis and adequate treatment make remission possible in many cases ✅.

🦋 Kidney disease is a silent illness. Getting to recognise its symptoms is key to getting an early diagnosis and preventing potential complications:

1️⃣ Urine changes (in frequency or colour)
2️⃣ Swelling in 🤲 🦶 🦵
3️⃣ Foamy urine
4️⃣ High blood pressure

Prevention is key! There are many ways to take care of your kidneys:
1️⃣ Have an active life 🚶‍♂️ 🏃‍♀️
2️⃣ Don't smoke 🚭
3️⃣ Have a healthy diet 🥗 🍏
4️⃣ Check & control your blood sugar & blood pressure
5️⃣ Take the appropriate fluid intake
6️⃣ Don't take NSAIDs regularly

#WorldKidneyDay
#KidneyHealthforAll ... See MoreSee Less

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🚨 Today is #WorldKidneyDay! And we are supporting the World Kidney Day campaign.

People with kidney disease are among the most vulnerable people in an emergency because of their ongoing need for consistently coordinated care, which is often lifelong and involves complex ongoing treatment.

🦋 It is estimated that about 40% of #SLE patients will suffer from #lupus nephritis: one of the most dangerous and frequent complications of #SLE. Routine check-ups and early detection of symptoms are key for getting an early diagnosis.

#kidneyhealthforall ... See MoreSee Less

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🇵🇹 What a week at the European Lupus Meeting 2026 in Lisbon!

You may have noticed something unusual…

🤫 Lupus Europe has been very quiet on social media throughout the Congress.

The reason? We were way too busy contributing, participating and engaging throughout #Lupus2026!

Here are just a few highlights of Lupus Europe’s involvement:

🔹 12 Fishbowl Chairs
🔹 9 abstracts supported by Lupus Europe
🔹 Our Chair, Jeanette Andersen, speaking at both the opening and closing ceremonies
🔹 6 Lupus Europe co-chairs at scientific sessions
🔹 3 interventions in sessions and interactive workshops

🚀 Beyond the scientific programme, the meeting was also completely full of valuable discussions and working meetings for ongoing projects that we are excited to share with you soon.

Over the coming weeks, we will share more about what happened in Lisbon, so keep an eye out for news!

📅 Meanwhile, don’t miss our ELM 2026 Recap Webinar as viewed by our PAN members, who were there!
🗓 16 March
⏰ 19:00 CET (i.e. Paris time)
💻 Zoom

Register now, to hear the key takeaways and highlights from this important European meeting.
Just email: secretariat@lupus-europe.org ... See MoreSee Less

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