Explore Our Library : A Window Into Lupus

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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

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

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 7,185 4,265

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 ·

28 Feb 2027832153984074032

🤩 Thank you for your support this #RareDiseaseDay!

💪 Along with organisations like @rarediseaseday and @eurordis, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌

#ShareYourColours
#rarediseaseday

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Lupus Europe @LupusEurope ·

28 Feb 2027783356235046913

👶 Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.

🫀 The most serious complication of neonatal lupus is a heart condition known as congenital heart block

#RareDiseaseDay

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Lupus Europe @LupusEurope ·

28 Feb 2027741321495015780

🦋 #Lupus is a #RareDisease that affects nearly 500,000 people in Europe and over 5 million people in the world.

‼️However, lupus affects not only patients but also their loved ones. Let's raise awareness of the importance of an early diagnosis

#RareDiseaseDay #ShareYourColours

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Lupus Europe @LupusEurope ·

28 Feb 2027707096829943830

🚨 There are over 300 million people who live with a #RareDisease in Europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🙌Join us & show your support for #RareDiseaseDay
#ShowYourColours

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Lupus Europe @LupusEurope ·

28 Feb 2027661764687438009

Today is #RareDiseaseDay!

And we have joined @rarediseaseday campaign.

Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours

https://www.youtube.com/watch?v=7J1oTfoIOGw

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Retweet on Twitter Lupus Europe Retweeted

Laurent ARNAUD @Lupusreference ·

24 Feb 2026380661162967529

✅ I have been silent these past weeks, because I was working on #COGNILUP. I'm now ready to report on the progress made so far:
- Online platform with 12 tests to explore #cognition in #lupus
- Secure data exporting
- Automated result interpreter
- Module to add new languages

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Lupus Europe @LupusEurope ·

24 Feb 2026266859553583361

😃 Throwback to the HMA/EMA Multi-Stakeholder Workshop on AI.

Watching Alain Cornet present #LupusGPT at a high-level regulatory forum confirmed something important: patient-led innovation belongs in the future of AI in medicine.

Try it now! https://lupusgpt.org/

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Retweet on Twitter Lupus Europe Retweeted

EULAR @eular_org ·

18 Feb 2024151930151309403

🌍 Join us on 18 March 2026 for the WORD Day Webinar!

Our expert speakers will share valuable perspectives on early recognition and the importance of specialised paediatric treatment.

Join the webinar here 👉 https://pulse.ly/3bgcxkgz8w

#WORDDay2026

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Live Facebook Feed

Today is rare disease day!

🚨 There are over 300 million people who live with a #RareDisease in #europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #rarediseases:

1️⃣ There are more than 6000 identified rare diseases.

2️⃣ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them.
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.

Along with organisations like Rare Disease Day and EURORDIS-Rare Diseases Europe, we will carry on working towards an early diagnosis, access to treatment and equality for #RareDisease patients 🙌.

Thank you for your support on this #rarediseaseday!

#ShareYourColours ... See MoreSee Less

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#lupus is a #RareDisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #RareDisease in #europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website

f.mtr.cool/iyctvzvvtj ... See MoreSee Less

#Lupus is a #RareDis

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Today is #RareDiseaseDay!

And we have joined Rare Disease Day campaign.

Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours

www.youtube.com/watch?v=7J1oTfoIOGw ... See MoreSee Less

Today is #RareDiseas

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😃 Throwback to the HMA/EMA Multi-Stakeholder Workshop on Artificial Intelligence.

Watching Alain Cornet show the world what #LupusGPT really is still gives us goosebumps! 🙌

For those who still don't know this artificial intelligence tool:

💡 LupusGPT is built by patients and doctors.
🗣️ It speaks virtually any language.
💸 It’s free and anonymous- you don’t need to create an account.
📚 It is trained exclusively on a curated repository of validated documents.
🚫 It does not invent answers.

If something is not in the repository, LupusGPT will clearly say so. It will not guess. It will not generate false information.

🥹 Seeing LupusGPT presented at such a high-level regulatory forum confirmed something important:
Patient-led innovation can meaningfully contribute to the future of AI in medicine when it is built responsibly.

🔗 Try it here! lupusgpt.org/

🧠 Are medical terms confusing? Prefer shorter explanations in simple language?
Try #EasyLupus! The easy-read version of LupusGPT: easy.lupusgpt.org/ ... See MoreSee Less

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