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

Lupie

Lupie-English

Lupie English

Lupie-French

Lupie French

Lupie-Dutch

Lupie Dutch

Lupie-German

Lupie German

Live Twitter Feed

Lupus Europe Follow 7,154 4,253

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

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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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Lupus Europe @LupusEurope ·

22 Jan 2014338140895391883

🇨🇭 Spotlight on Lupus Switzerland!

At our #LupusConvention, Lupus Switzerland showcased their latest magazine dedicated to men living with lupus.

👏 With 600+ copies printed, this initiative helps challenge assumptions and ensure every voice is represented.

Congratulations!

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Laurent ARNAUD @Lupusreference ·

20 Jan 2013673568605765722

✅ After MANY HOURS of work on my freetime, I am happy to share that #COGNILUP, the online free platform to test #cognition in #Lupus is going in the right direction 👍 More about it at @SLEUROSOCIETY meeting in Lisbon!

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SLEuro @SLEuroSociety ·

20 Jan 2013655590917042388

Pre-registrations for the 8th SLEuro Advanced Workshop on SLE are already open!

📍 Stockholm, Sweden 🇸🇪
🗓️ 8-9 May 2026
⏰ Deadline: 8th March 2026

Pre-register here: https://services.aimgroup.eu/ASPClient/home2.asp?eventoid=5512&TypeIN=N
Discover the Preliminary Programme and more: https://sleuro.org/advanced-workshop-on-sle/

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Lupus Europe @LupusEurope ·

19 Jan 2013296285357355046

🌟 Amazing article by our Chair, @Jeanette_Lupus, on how weight bias affects symptoms, treatment decisions & access to care in rheumatology.

🙏 Thank you @AV_Madenidou & @EMEUNET for the special #EMEUNEWS issue on #Obesity & #RheumaticDiseases.

https://emeunews.org/2025/12/10/more-than-a-number-weight-bias-in-rheumatology-care/

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Laurent ARNAUD @Lupusreference ·

16 Jan 2012066226948977087

✅ With #SLAKE, we can detect important differences in the level of essential #Lupus knowledge of #SLE participants across world regions, as a way to better focus our efforts
SLAKE: https://doi.org/10.1093/rheumatology/keaf649

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Lupus Europe @LupusEurope ·

15 Jan 2011755980040646813

🚨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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EULAR @eular_org ·

13 Jan 2011045595587207678

🎓 New interactive learning module from EULAR Congress 2025 meets Education now available!

"What is New: Systemic Lupus Erythematosus" with Dr. Antonis Fanouriakis covers diagnostic advances, treatment optimisation & new therapeutic classes.

More here: https://pulse.ly/x0u90v9r8s

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Live Facebook Feed

🇨🇭 Spotlight on Lupus Switzerland!

At our #lupusconvention, Lupus Switzerland presented a powerful poster showing the cover of their latest magazine, highlighting their commitment to diversity and inclusion within the lupus community.

🧑‍🤝‍🧑 Although around 9% of their members are men, this was the first time in more than ten years and 22 issues that the topic had been addressed. A meaningful step towards ensuring everyone feels seen and represented.

🖨️ With more than 600 copies printed and distributed, this initiative helps raise awareness, challenge assumptions and promote inclusion across their community.

👏 Congratulations to Lupus Switzerland! ... See MoreSee Less

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🚨 Have you ever felt that your symptoms or treatment needs were taken less seriously because of your body size?

😪 For many patients, discussions about symptoms, pain, or treatment options are overshadowed by weight. Medication side effects, inflammation, fatigue, and reduced mobility are often ignored, while responsibility is placed on the individual. This can have real consequences for clinical decisions, referrals, and quality of care.

🌈 We are extremely proud of our Chair, Jeanette Andersen, for addressing this reality in her article “More Than a Number: Weight Bias in Rheumatology Care”, published in the special #EMEUNEWS issue on #Obesity and #RheumaticDiseases.

Thank you, Anastasia Madenidou and EMEUNET, for giving space to this important perspective and for inviting Jeanette to contribute.

Read the full article here: emeunews.org/2025/12/10/more-than-a-number-weight-bias-in-rheumatology-care/ ... See MoreSee Less

🚨 Have you ever f

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📌 Reminder for our Youth Group Webinar!

🚫 Alcohol, recreational drugs & lupus: what are the risks?
🌟 What young people living with lupus need to know to protect their health.

Lupus Europe’s Youth Group invites you to an open, evidence-based discussion with Dr Luca Moroni focused on how alcohol and recreational substances can interact with lupus, treatments, and long-term health.

We will talk clearly about:

🚨 Known risks and current uncertainties
🚨 Interactions with lupus treatments
🚨 Real-life situations often left out of the conversation

😱 Why talk about this?

Because young people sometimes make choices that can carry real health risks, and they don’t always feel able to tell their loved ones or doctors everything.

‼️ Alcohol and recreational substances are part of many social environments. When lupus is involved, lack of reliable information can increase risks.

💁‍♀️ Talking about this before helps:

•⁠ ⁠Reduce avoidable risks.
•⁠ ⁠Encourage safe and informed decisions.
•⁠ ⁠Create a safe space for questions that are often left unasked.

🌈 That’s why this webinar exists: to anticipate real situations, NOT encourage them, and provide clear, evidence-based information for young people living with lupus.

🗓 29 January 2026
⏰ 19:00 CET
💻 Online

📩 Register now by emailing secretariat@lupus-europe.org

⏳ There’s still time to join! ... See MoreSee Less

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🇳🇴 Spotlight on Lupus Norway!

At our #LupusConvention, Lupus Norway shared how they continue to support people living with lupus through information, education and strong collaboration with healthcare professionals.

🏥 Every year, the University Hospital in Oslo organises a meeting for patients with connective tissue diseases, including lupus. Lupus Norwa has an information stand that offers reliable resources and answers questions from anyone interested in SLE.

📘 They have also published two new brochures to help patients better understand and manage life with lupus.:
“Practical tips for improving your daily life” and “Find out more about SLE”.

📰 To keep their community informed, Lupus Norway publishes a newsletter twice a year, focusing on key lupus-related topics such as research projects, sun protection, and patient stories. They also share updates about their participation in conferences and meetings, including EULAR, helping members stay up to date and engaged.

👏 Congratulations, and thank you, Lupus Norway, for your commitment. You are a great example of how patient organisations can make a difference ... See MoreSee Less

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