Explore Our Library : A Window Into Lupus

Highlight of the Month

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

Country Level Data
Croatia

DENMARK

Country Level Data
Denmark

FINLAND

Country Level Data
Finland

FRANCE

Country Level Data
France

GERMANY

Country Level Data
Germany

ITALY

Country Level Data
Italy

NORWAY

Country Level Data
Norway

POLAND

Country Level Data
Poland

PORTUGAL

Country Level Data
Portugal

SPAIN

Country Level Data
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

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Convention Report 2025

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 7,231 4,309

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

ERN ReCONNET 🇪🇺 @ern_reconnet ·

18h 2053384550521483467

💜 World Lupus Day 🌍

At #ERNReCONNET, we are profoundly committed to supporting the lupus community @LupusEurope

Together, let’s #MakeLupusVisible by raising awareness and sharing knowledge

Reply on Twitter 2053384550521483467 Retweet on Twitter 2053384550521483467 1 Like on Twitter 2053384550521483467 0 Twitter 2053384550521483467

Lupus Europe @LupusEurope ·

20h 2053362151423676862

🦋 𝐓𝐨𝐝𝐚𝐲 𝐢𝐬 #𝐖𝐨𝐫𝐥𝐝𝐋𝐮𝐩𝐮𝐬𝐃𝐚𝐲❗

And now it is easier than ever to raise #LupusAwareness thanks to #Lupus100 and #LupusGPT!

Check https://lupus100.org/ & https://lupusgpt.org & find reliable information about #lupus in many languages!

#MakeLupusVisible

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Retweet on Twitter Lupus Europe Retweeted

Laurent ARNAUD @Lupusreference ·

21h 2053343058586911130

✅ Today, 10th of May 2026, is the world #lupus day 🦋
Re-tweet 🔄, spread the word, let the world 🌍🌎🌏 be aware of this complex #autoimmune disease with so many facets 💎, including invisible ones.
#worldlupusday
#lupusday

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Lupus Europe @LupusEurope ·

8 May 2052751223728619887

🤩 May 10 is #WorldLupusDay! And our Youth Group is commemorating it with a webinar on fertility & family planning in young people with lupus.

📅 May 10
🕖 7 pm CET
🎙️ Prof. @lauraandreoli80
🗣️Moderated by our Chair, @Jeanette_Lupus

Join us! Email secretariat@lupus-europe.org

Reply on Twitter 2052751223728619887 Retweet on Twitter 2052751223728619887 0 Like on Twitter 2052751223728619887 5 Twitter 2052751223728619887

Retweet on Twitter Lupus Europe Retweeted

Amanda G @LAlupusLady ·

2 May 2050478010424590603

Joining the global community
raise #Lupus awareness with @LupusEurope

Together we can #MakeItCount on May 10. #LupusAwarenessMonth

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Lupus Europe @LupusEurope ·

5 May 2051558176164655557

🌈 Beyond what you’ve experienced, something awaits.

🌟 A new way to approach your consultation is coming.

Make your consultation count.

💥 Stay tuned

#MakeItCount

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Lupus Europe @LupusEurope ·

4 May 2051364319502414280

🆘 Skin matters in lupus.

‼️75–80% of people with SLE experience skin involvement, yet skin lupus has seen no new treatment options for over 80 years.

WHO’s draft Global Action Plan on Skin Diseases is open for consultation.

🗣️ Add your voice by 10 May 👇

GlobalSkin @IADPO

#WHO has opened a public consultation on its draft Global Action Plan for Skin Diseases.

Your input can help shape how countries act and ensure accountability for the 2B+ people affected.

🗣️ Make your voice heard
📅 Deadline: May 10, 2026

👉 https://www.who.int/news-room/articles-detail/public-consultation--draft-global-action-plan-on-skin-diseases-as-a-global-health-priority-(gap-skin)

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Lupus Europe @LupusEurope ·

1 May 2050229596344164578

❤️‍🔥 Something big is coming...

... this #WorldLupusDay 🌍.

#MakeItCount

Reply on Twitter 2050229596344164578 Retweet on Twitter 2050229596344164578 1 Like on Twitter 2050229596344164578 3 Twitter 2050229596344164578

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Live Facebook Feed

🦋 #WorldLupusDay is coming to an end!

❤️ Thank you all for the support you have shown throughout this important day, as people around the world have come together to raise awareness of the impact lupus can have.

🌈 At Lupus Europe, we believe there is something very important we also need to show the world: our vitality, our energy, and our will to enjoy life, take part, contribute, and be heard.

🌟 Our vision is a fulfilling life for all people with lupus in Europe, until we reach a world without lupus.

😃 We work hard. We show up. We support each other. We all live with lupus in different ways, even if our amazing Lupus Europe family sometimes seems to forget about it when we are at an event, in a meeting, or working together for the organisation.

🦋 Lupus is an invisible illness with many faces. Let’s close this #WorldLupusDay with our hopes, our laughter and our enthusiasm for life.

💬 That is why today we also want to remind you of our #MakeItCount campaign and the 𝐋𝐮𝐩𝐮𝐬 𝐂𝐨𝐧𝐬𝐮𝐥𝐭𝐚𝐭𝐢𝐨𝐧 𝐂𝐚𝐫𝐝𝐬.

These cards are designed to help people living with lupus prepare for medical appointments, organise their thoughts, identify what matters most, and make consultations more focused and meaningful.

🌺 Visit our website, download the Lupus Consultation Cards, and use them at your next appointment.

www.lupus-europe.org/lupus-consultation-cards/

Because your priorities, questions, and needs deserve a place in every consultation.
Let’s #MakeItCount. ... See MoreSee Less

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💜 Thank you to everyone who joined our Youth Group webinar on fertility, family planning & lupus today!

Important conversations like these help tackle fears, misconceptions & unanswered questions around lupus and reproductive health.

🦋 Don't forget to include this topic in the Lupus Consultation cards in your next appointment!

#MakeItCount. Check out this new tool that helps patients prepare for consultations and improve communication with healthcare professionals.

Available in many languages!

📌 Download here:
www.lupus-europe.org/lupus-consultation-cards/ ... See MoreSee Less

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‼️ It is estimated that about 50% of #SLE patients will suffer from #lupus nephritis, one of SLE's most dangerous & frequent complications.

💊 Routine checkups and available treatments make it possible for 60–70% of patients to achieve complete or partial remission.

#MakeItCount
#WorldLupusDay ... See MoreSee Less

‼️ It is estimat

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LUPUS EUROPE was live.

Lupus Europe Youth Group Webinar on Fertility & Reproduction ... See MoreSee Less

Lupus Europe Youth Group Webinar

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