Explore Our Library : A Window Into Lupus

Highlight of the Month

Consequences of medication unavailability on patient anxiety

Living with lupus

Living with lupus in 2020

Coping with systemic lupus erythematosus in patients’ words

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

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Denmark

FINLAND

Country Level Data
Finland

FRANCE

Country Level Data
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

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

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 6,772 4,076

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 ·

3h 1921868908325179852

🧠 Brainfog is one of the most invisible symptoms of lupus, and it still has no official scale.

Prof. @LupusReference & LBFSS team, with the support of Lupus Europe, are changing that—and they need YOU.

📲 Fill the survey. Let’s make brainfog visible.
🔗 https://lupusresearch.limequery.org/697679?lang=en

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; Lupus Europe @LupusEurope ·

5h 1921829238543401133

🦋 Do you have cutaneous #lupus?

💻 In that case, you cannot miss this webinar organised by @ern_reconnet!

ERN ReCONNET 🇪🇺 @ern_reconnet

Register now for the 🆕@ern_reconnet #webinar “From basics to updates for cutaneous lupus erythematosus (CLE)” with Dr François Chasset moderated by Dr Maarten Limper.
🗓️May 14th - 16 CEST
✍️Register here🆓http://bit.ly/4dpRAfT

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Retweet on Twitter Lupus Europe Retweeted

; Laurent ARNAUD @Lupusreference ·

11 May 1921455049944727839

✅ Don't forget to participate to the #lupus #brainfog study ⬇️ It's simple & can help other patients a lot. We simply ask you how OFTEN and STRONGLY you have #brainfog and more importantly what are the 'FEELINGS' and 'IMPRESSIONS' you have during your brainfog episodes

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; Lupus Europe @LupusEurope ·

10 May 1921283477208486172

❤️Thank you for your support on this day & for ⬆️ awareness of the potential impact lupus can have.

However, there's something 🗝️that we also need to show.

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

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Retweet on Twitter Lupus Europe Retweeted

; PReS Lupus Working Party @PReSLupusWP ·

10 May 1921132127938056294

🦋 Today on #WorldLupusDay, we shine a light on childhood-onset SLE #cSLE Early diagnosis, better treatments, and global awareness can transform young lives 🌟

🤝Let’s stand together to support children living with lupus 💜 #Lupus #LupusAwareness #PediatricRheumatology

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; Lupus Europe @LupusEurope ·

10 May 1921272618402918490

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

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

#WorldLupusDay
#Lupus100

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; Lupus Europe @LupusEurope ·

10 May 1921251824998244591

Despite significant improvements in diagnosis delay & treatment strategies,the burden of #SLE remains⬆️.
Association between diagnosis delay, disease activity & burden on daily life in patients with #lupus by @Lupusreference et al: https://buff.ly/3pgBsrL
#WorldLupusDay
#Lupus100

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; Lupus Europe @LupusEurope ·

10 May 1921237626834526639

✨What a wonderful way to raise awareness!

Giving voice to patients is crucial to truly understand the real impact of #lupus. Empowering #PROs helps bridge the gap between clinical perspectives and lived experiences.

Proud to be part of #3TR!

#WorldLupusDay

3TR-IMI @3TR_IMI

#Lupus affects millions but is often misunderstood. On #WorldLupusDay, #3TR unites to #MakeLupusVisible.

Blanca Rubio, @LupusEurope patient representative, discusses how #PROs can transform care and improve treatment.

👉 Watch: https://3tr-imi.eu/research/patient-reported-outcomes

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Live Facebook Feed

2 days ago

🦋 #WorldLupusDay is coming to an end!

❤️ Thank you all for the support you have shown throughout this important day in which the whole world has raised awareness of the impact that lupus can potentially have 💥.

🌈 However, we at Lupus Europe believe that there is something very important that we also need to show the world: our vitality, our energy, and our will to enjoy life – including our work.

🌟 Our strong vision in a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.

😃 We always work hard! We all have lupus, though our amazing Lupus Europe family seems to forget about it when we are at an event, a meeting, or are working for the organisation.

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

🌺 Every day, but especially this # WorldLupusDay, we thank all those who stand by our side and show the best face of the 1000 faces lupus has. ... See MoreSee Less

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2 days ago

‼️ 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.

#WorldLupusDay
#Lupus100 ... See MoreSee Less

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

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

#WorldLupusDay
#Lupus100

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0 CommentsComment on Facebook

2 days ago

🔴 Despite significant improvements in diagnosis delay & treatment strategies, the burden of #SLE remains high.

Learn more on the association between diagnosis delay, disease activity and burden on daily life in patients with #lupus in this study: lupus.bmj.com/content/8/1/e000469

And get to better understand how to live with #lupus thanks to #Lupus100! A website written by doctors and patients to make it possible for people with lupus to have easy-to-understand and high-quality information about lupus!

lupus100.org/en/100-questions#Challenges

Need more? Check out #LupusGPT! lupusgpt.org/

#WorldLupusDay
#Lupus100 ... See MoreSee Less

🔴 Despite significant improvements in diagnosis delay & treatment strategies, the burden of #SLE remains high.

Learn more on the association between diagnosis delay, disease activity and burden on daily life in patients with #lupus in this study: https://lupus.bmj.com/content/8/1/e000469

And get to better understand how to live with #lupus thanks to #Lupus100! A website written by doctors and patients to make it possible for people with lupus to have easy-to-understand and high-quality information about lupus!

https://lupus100.org/en/100-questions#Challenges

Need more? Check out #LupusGPT! https://lupusgpt.org/

#WorldLupusDay
#Lupus100

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2 CommentsComment on Facebook

2 days ago

🚨 #lupus is an autoimmune disease that affects nearly 500,000 people in Europe and over 5 million people in the world.

It affects not only patients but also their loved ones.

Do you want to know what the first symptoms of #lupus are?

Visit #Lupus100 and #lupusgpt and find out!

Getting to know the disease is key for an early diagnosis.

lupus100.org/en/questions/what-are-the-first-signs-of-lupus

lupusgpt.org/

#WorldLupusDay
#MakeLupusVisible ... See MoreSee Less

🚨 #Lupus is an autoimmune disease that affects nearly 500,000 people in Europe and over 5 million people in the world.

It affects not only patients but also their loved ones.

Do you want to know what the first symptoms of #lupus are?

Visit #Lupus100 and #LupusGPT and find out!

Getting to know the disease is key for an early diagnosis.

https://lupus100.org/en/questions/what-are-the-first-signs-of-lupus

https://lupusgpt.org/

#WorldLupusDay
#MakeLupusVisible

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3 CommentsComment on Facebook