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

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

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

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 5,989 3,620

Lupus Europe is the umbrella association of currently 31 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.

Retweet on Twitter Lupus Europe Retweeted

; Laurent ARNAUD @Lupusreference ·

4 May 1786655785553924258

✅ During STEP 3, a total of 234 potential #treatment strategies have been submitted by the experts of @ern_reconnet #SLICC & @SLEuroSociety for rare #Lupus manifestations. I will do a lil bit of triage and duplicate removal and we will pick the winners🏅during phase 4 👌

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; Lupus Europe @LupusEurope ·

3 May 1786414056452022647

♦️ Few days left to fill the survey!

✍🏻 Realiza la encuesta.

🔊 Comparte con tu comunidad.

🙏 Help us and @felupus ensure the Spanish population is represented

https://s.surveylegend.com/-Nudx9pGv-1XtZ6OnYWs

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; EULAR @eular_org ·

1 May 1785610846971789361

📢 Explore captivating sessions promoting high-quality research, enhancing clinical practice, and support the professional development of healthcare practitioners.

📅 See you in Vienna from 12 - 15 June!

👉https://pulse.ly/omc4parykm

#EULAR #Rheumatology #eularHPR #EULAR2024

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; Lupus Europe @LupusEurope ·

2 May 1785999045741117708

🦋It's #LupusAwarenessMonth❗

🦵 #KickLupus: make it visible

Take part in the Living With Lupus in 2024 survey.

🗣️Your insights are crucial for capturing the diverse experiences of those living with #lupus across Europe.

🧵Find the link for all 21 languages in this thread⤵️

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Retweet on Twitter Lupus Europe Retweeted

; Lupus Hub @lupus_hub ·

26 Apr 1783851260069736915

Are you aware of the new recommendations on physical activity and exercise for patients with SLE?
Find out here 👉 https://loom.ly/2S3OoJg
@Lupusreference @mugartegil @IoannisParodis #MedEd #MedTwitter #lupus #RheumTwitter

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; Laurent ARNAUD @Lupusreference ·

30 Apr 1785365872833429630

✅ May is #Lupusawareness month!!! 🦋 Let's spread the word! #Lupus is an #autoimmune disease affecting approximately 3.4 MILLION people in the world 🌎🌍🌏 and is associated with a wide range of #symptoms, some of which are not always visible!

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Retweet on Twitter Lupus Europe Retweeted

; Asociación de #Lupus de Madrid @LupusMadrid ·

26 Apr 1783894560382374364

🙏 Si vives en España y no lo has hecho aún, rellena esta encuesta en español de @lupuseurope.

🦋 Necesitamos un buen número de respuestas de pacientes españoles para obtener datos más reales con los q poder trabajar para mejorar la calidad de vida de las personas con #lupus.

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; Lupus Europe @LupusEurope ·

30 Apr 1785233088039047246

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻Compila il sondaggio.

🔊Condividi con il tuo network.

https://s.surveylegend.com/-NsvfEBWVnGf0eLQEC-0

🙏 Help us and @GruppoLesItalia achieve more answers to ensure that the Italian population is represented in the results

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Live Facebook Feed

6 hours ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻Weź udział w ankiecie.

🔊Udostępnij w swojej społeczności.

🙏 Help us and Lupus Poland achieve more answers to ensure that the Polish population is represented in the results

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3 days ago

♦️ Few days left to fill the survey!

✍🏻 Realiza la encuesta.

🔊 Comparte con tu comunidad.

🙏 Help us and Felupus ensure the Spanish population is represented

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4 days ago

🦋 It's #LupusAwarenessMonth❗

🦵 #KickLupus: make it visible

Take part in the Living With Lupus in 2024 survey.

🗣️Your insights are crucial for capturing the diverse experiences of those living with #lupus across Europe.

𝗞𝗲𝘆 𝗽𝗼𝗶𝗻𝘁𝘀 𝗼𝗳 𝘁𝗵𝗲 𝘀𝘂𝗿𝘃𝗲𝘆:

1️⃣ Confidential and brief: Your identity stays anonymous and takes only 15 minutes.
2️⃣ Personalized and relevant: The survey adapts to your unique situation and covers aspects pertinent to your life with lupus.

👨‍💻 We're gathering data to:

🔹 Understand the current landscape of lupus treatment and management in Europe.
🔹 Identify key areas for support and improvement.
🔹 Ensure that the voices of those living with lupus are heard.
🔹 Recognise the diverse needs and challenges faced by the lupus community.

🦋 This survey will dive into your unique experience on 🩺 diagnosis & symptoms, 💊 treatment & 👨‍👩‍👧‍👦 how lupus affects your daily activities and the strategies you employ to manage it.

🔄 Please 𝘀𝗵𝗮𝗿𝗲 𝘁𝗵𝗶𝘀 𝘀𝘂𝗿𝘃𝗲𝘆 with your community and on your social media.

Languages available:

🇨🇿 Czech s.surveylegend.com/-NtkhoZPH8WNeA5e2ZCC
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🇩🇪 German s.surveylegend.com/-Nr0_sVBruuAHJTsHkuE
🇬🇷 Greek s.surveylegend.com/-Nr5KNkcBGDrsYl1F1xG
🇪🇸 Spanish s.surveylegend.com/-Nudx9pGv-1XtZ6OnYWs
🇬🇧 English s.surveylegend.com/-NqgyR5b7jLpCyBwEssv
🇪🇪 Estonian s.surveylegend.com/-Nt145Q5s02kLYdspFDs
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🇮🇹 Italian s.surveylegend.com/-NsvfEBWVnGf0eLQEC-0
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🇷🇴 Romanian s.surveylegend.com/-NrUOqKxZuU6V6KLfWoG
🇷🇺 Russian s.surveylegend.com/-NtkhreGgEglDg9AeMfH
🇸🇮 Slovenian s.surveylegend.com/-Nt-wdNdIqT4v3ptXEM1
🇫🇮 Finnish s.surveylegend.com/-NrB_0Hf4Z-ZAZH55K7U
🇺🇦 Ukrainian s.surveylegend.com/-Nt1t0lpqlsn9jRPHe-3
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🇵🇹 Portuguese s.surveylegend.com/-NuPMTJ2TjOzn2Oxa3Hi
🇭🇺 Hungarian s.surveylegend.com/-Nucu0zQ8je0kzInRWb8

Association Lupus erythémateux Belgique Luupuse Selts / Lupus Estonia Организация на пациентите с ревматологични заболявания Σύνδεσμος Ρευματοπαθών Κύπρου ΣύΡεΚ Lupus Suomi ry Association Francaise du lupus et autres maladies auto-immunes AFL + LUPUS FRANCE Lupus Erythematodes SHG e.V. Ελληνική Εταιρεία Αντιρευματικού Αγώνα ΕΛ Ε ΑΝ Α Lupus Poland Lupus Klub Motýlik Reumatikerförbundet Lupus UK Felupus Associação de Doentes com Lúpus ... See MoreSee Less

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5 days ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍️ Responda à pesquisa e compartilhe com sua comunidade.

🙏 Help us & Associação de Doentes com Lúpus achieve more answers to ensure that the Portuguese population is represented in the results

s.surveylegend.com/-NuPMTJ2TjOzn2Oxa3Hi

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