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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

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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

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 7,252 4,318

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 May 2060044423715488152

#EULAR2026 is around the corner!

🦋Lupus Europe plays a significant role in this year's Congress, with a diverse range of exciting topics and great participation.

✅ Are you going to @eular_org? Let's connect! Come to our booth and say hi!

Booth O1
Capital Suite Foyer, Level 3

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Lupus Europe @LupusEurope ·

25 May 2058911917066817745

✅ When doctors recommend a tool, it is because they see their potential.

👩‍⚕️ In this video, Dr @sarahdyball1 introduces the Lupus Consultation Cards.

🤝 Co-created by doctors and patients, they help patients prepare for their consultation.

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

#MakeItCount

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Lupus Europe @LupusEurope ·

20 May 2057032377986166983

🔴 According to Lupus Europe’s 2024 Swiss Knife Survey, joint pain/swelling was reported by 72.8% of people living with #lupus, & 44.6% said it stopped them from living life to the fullest.

🩺 In a lupus consultation, symptoms matter. But so does their impact.

#AiArthritisDay

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Lupus Europe @LupusEurope ·

18 May 2056314609355645097

🗨️Lupus affects men, too! And its impact can be different, both mentally & physically.

The Lupus Consultation Cards for men help prioritise what matters most & support more focused consultations.

🌍Available in 18 languages
📥Free download: https://www.lupus-europe.org/lupus-consultation-cards/

#MakeItCount

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Retweet on Twitter Lupus Europe Retweeted

Laurent ARNAUD @Lupusreference ·

15 May 2055195562660503714

✅ Thank you @autoimmunitymd for the invitation to talk about challenges in #Lupus. I have the feeling that there is now a significant momentum in #SLE
- NEW treaments on their way
- NEW recommendations for rare manifestations
- LUPUS-ALERT to screen for vulnerabilities etc

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Lupus Europe @LupusEurope ·

14 May 2054925694312792466

😱 New kid on the block!

✅ Lupus Europe proudly presents the Lupus Consultation Cards: a tool designed to help both patients & HCPs structure consultations & support more focused discussions.

🌍 Available in 18 languages!
📥 Download: https://www.lupus-europe.org/lupus-consultation-cards/

#MakeItCount

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Retweet on Twitter Lupus Europe Retweeted

ERN ReCONNET 🇪🇺 @ern_reconnet ·

13 May 2054472528395911445

TODAY’S @ERNReCONNET webinar at 16 CET on “CAR-T Therapy in Systemic Lupus Erythematosus (SLE): Explained to the Patient” with Prof. Georg Schett, moderated by Prof. Marta Mosca and the ePAG Jeanette Andersen.

✍️ Register here to participate: http://rb.gy/s18q03

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Lupus Europe @LupusEurope ·

12 May 2054110343358488882

🟪 Consultations are short. Lupus is complex.

💫 A simple way to help patients prepare, prioritise, and support more focused discussions.

The Lupus Consultation Cards are now available in 18 languages.

🔗 Download them for free: https://www.lupus-europe.org/lupus-consultation-cards/

#MakeItCount

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Live Facebook Feed

🎉 In six days, we will be at #EULAR2026!

If you haven't heard of EULAR before, it's Europe's largest rheumatology congress 😃.

🌍 Every year in June, EULAR brings together over 13,000 researchers, clinicians, and patient advocates from more than 130 countries, with 170+ scientific sessions.

🦋 Lupus Europe will be there, and we'll be bringing you the latest on lupus from the congress floor.

🎙️ Not only that! Lupus Europe will be an active part of the congress! As in previous years, some of our Board and PAN members will be presenting posters and abstracts, chairing sessions, and taking the stage as speakers.

👀 Stay tuned! ... See MoreSee Less

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𝗟𝘂𝗽𝘂𝘀 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻 𝗖𝗮𝗿𝗱𝘀: a 𝗻𝗲𝘄 𝘁𝗼𝗼𝗹, 𝗿𝗲𝗰𝗼𝗺𝗺𝗲𝗻𝗱𝗲𝗱 𝗯𝘆 𝗹𝘂𝗽𝗼𝗹𝗼𝗴𝗶𝘀𝘁𝘀❗

✅ When doctors recommend a tool, it is because they see how it can support real conversations in the clinic.

👩‍⚕️ In this video, Dr Sarah Dyball introduces the Lupus Consultation Cards.

🤝 These cards were created through collaboration between doctors and patients to help people living with lupus 𝗽𝗿𝗲𝗽𝗮𝗿𝗲 𝗳𝗼𝗿 𝘁𝗵𝗲𝗶𝗿 𝗺𝗲𝗱𝗶𝗰𝗮𝗹 𝗰𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻𝘀.

They can support patients in:
✔️ organising what they want to discuss
✔️ identifying their main concerns
✔️ preparing their top questions
✔️ making the consultation more focused

😃 For doctors, the cards can help them understand faster what matters most to the person in front of them.

💜 A simple tool. A better consultation.

👉 Download or fill in the cards online and take them to your next doctor's appointment and #MakeItCount:

www.lupus-europe.org/lupus-consultation-cards/ ... See MoreSee Less

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☹️ Does joint pain affect your daily life? You are not alone.

💁‍♀️ According to Lupus Europe’s 2024 Swiss Knife Survey, joint pain and/or swelling were reported by 𝟳𝟮.𝟴% 𝗼𝗳 𝗽𝗲𝗼𝗽𝗹𝗲 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗦𝗟𝗘. It was also one of the symptoms 𝗺𝗼𝘀𝘁 𝗹𝗶𝗸𝗲𝗹𝘆 𝘁𝗼 𝘀𝘁𝗼𝗽 𝗽𝗲𝗼𝗽𝗹𝗲 𝗳𝗿𝗼𝗺 𝗹𝗶𝘃𝗶𝗻𝗴 𝗹𝗶𝗳𝗲 𝘁𝗼 𝘁𝗵𝗲 𝗳𝘂𝗹𝗹𝗲𝘀𝘁, reported by 44.6% of respondents.

🦋 #Lupus is a systemic autoimmune disease that can affect different parts of the body, including the joints.

💜 Today is World Aimmune Autoinflammatory Arthritis Day, also known as #AiArthritisDay.
It is a day to raise awareness of autoimmune and autoinflammatory diseases, such as lupus, that can involve joint inflammation.

❌ But lupus is not “just joint pain”.

‼️ Lupus can affect the whole body. That’s why it is important that symptoms such as pain, fatigue, swelling, stiffness, and their impact on daily life are discussed clearly during medical appointments.

💬 To help with these conversations, take a look at the 𝗟𝘂𝗽𝘂𝘀 𝗖𝗼𝗻𝘀𝘂𝗹𝘁𝗮𝘁𝗶𝗼𝗻 𝗖𝗮𝗿𝗱𝘀: a practical tool to help people living with lupus prepare for appointments and explain what matters most to them.

Inspired by NVLE and in collaboration with ERN RECONNET, these cards are available in 19 languages (more to come!).

📥 Download them here and make your consultation count: www.lupus-europe.org/lupus-consultation-cards/

#MakeItCount ... See MoreSee Less

☹️ Does joint pa

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🗨️ Lupus affects men, too! And its impact can be different from women’s, both physically and mentally.

‼️ From symptoms to how it is experienced and expressed, men living with lupus may face challenges that are not always recognised or addressed in consultation.

💁‍♂️ That's why we have created the Lupus Consultation Cards adapted for men: designed to help prepare for consultations, prioritise concerns, and make sure what matters most is addressed.

🌍 Available in 18 languages!
📥 Download for free and make your consultation count: www.lupus-europe.org/lupus-consultation-cards/

🟣 #MakeItCount ... See MoreSee Less

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