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Highlight of the Month

Swiss Knife Survey 2024

Living with lupus

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Swiss Knife Survey 2024

Coping with systemic lupus erythematosus in patients’ words

Living with lupus in 2020

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Association of diagnosis delay and disease activity with burden on Daily life

Living-with-lupus1

20 Facts on living with lupus in 2020

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Croatia

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Patient Panel Reports

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Patient Panel I on Treatment

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Patient Panel II on the Burden of Living with Lupus

Lupus-3

Patient Panel III on Youth

Published Research

P142 Lupus Europe – when patients help research
P110 Lupus Europe – exercise program for lupus patients
I7 Patients expectations, and what we (can) do about it
Consequences of medication unavailability on patient anxiety

Hydroxychloroquine treatment in European patients with lupus erythematosus: dosing, retinopathy screening and adherence
What are the topics you care about making trials in lupus more effective? Results of an Open Space meeting of international lupus experts
Hydroxychloroquine availability during COVID-19 crisis and its effect on patient anxiety

P143 Lupus Europe – what we learned from patient panels
Living with lupus in 2020
Coping with systemic lupus erythematosus in patients’ words

Convention Reports

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Convention Report 2024

2023

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

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Lupie English

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Lupie French

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National Member News – Hello from the Czech Republic
My Dream to Run– A lupus Patient’s Dream Come True!
Join the Conversation: Lupus Europe’s Youth Webinar for World Lupus Day
National Member News – Hello from Poland

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Lupus Europe Follow 7,143 4,252

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

Retweet on Twitter Lupus Europe Retweeted

Laurent ARNAUD @Lupusreference ·

8 Jan 2009114846193688797

✅ Cognitive dysfunction is a MAJOR topic in #LUPUS because of the impact it has on patients. If you have #SLE please HELP US validate the Lupus Brain Fog Severity Scale #LBFSS so that we can help more. Participation to this research takes ~15 mins
LINK: https://lupusresearch.limequery.org/337533?lang=en

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Lupus Europe @LupusEurope ·

10 Jan 2010019779533316143

🛠️ Maintenance alert:

We are carrying out maintenance work on our main website.

🌐 During this time, you may experience limited access or temporary disruptions.

In the meantime, you can visit #LupusGPT and #Lupus100 for lupus info!

Thank you for your support & understanding!

Twitter feed image.

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Lupus Europe @LupusEurope ·

8 Jan 2009325282100916424

🧠 Brain fog in lupus is real, but its meaning has never been clearly defined in a lupus-specific way.

🙏 Help us & the research team led by Prof @Lupusreference validate the Lupus Brain Fog Severity Scale (LBFSS).

Your input is essential.

https://lupusresearch.limequery.org/337533?lang=en

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Lupus Europe @LupusEurope ·

8 Jan 2009179769909162130

‼️If you have #lupus and #BrainFog, it’s important that you take part in this survey‼️

Laurent ARNAUD @Lupusreference

✅ Cognitive dysfunction is a MAJOR topic in #LUPUS because of the impact it has on patients. If you have #SLE please HELP US validate the Lupus Brain Fog Severity Scale #LBFSS so that we can help more. Participation to this research takes ~15 mins
LINK: https://lupusresearch.limequery.org/337533?lang=en

Reply on Twitter 2009179769909162130 Retweet on Twitter 2009179769909162130 4 Like on Twitter 2009179769909162130 7 Twitter 2009179769909162130

Lupus Europe @LupusEurope ·

7 Jan 2008869574385516928

🛠️ Maintenance alert:

We are carrying out maintenance work on our main website.

🌐 During this time, you may experience limited access or temporary disruptions.

In the meantime, you can visit #LupusGPT and #Lupus100 for lupus info!

Thank you for your support & understanding!

Twitter feed image.

Reply on Twitter 2008869574385516928 Retweet on Twitter 2008869574385516928 1 Like on Twitter 2008869574385516928 3 Twitter 2008869574385516928

Lupus Europe @LupusEurope ·

7 Jan 2008846348284539276

🚨Calling all men with lupus in Europe!

Join other men in this 𝗢𝗡𝗟𝗜𝗡𝗘 𝗘𝗩𝗘𝗡𝗧 organised by men with lupus.

📅 10th January (this Sat)
🕙 10am CET
📍Online

E-mail ricky@lupus-europe.org to register

🔝 Hosted by Lupus Europe, facilitated by @ricky_chotai & @apanteli

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Retweet on Twitter Lupus Europe Retweeted

Nature Reviews Disease Primers @DiseasePrimers ·

4 Jan 2007780437549281342

Lupus nephritis is a type of immune-mediated glomerulonephritis and a serious complication of systemic lupus erythematosus that can affect up to 60% of patients with this condition.

Lupus nephritis

Nature Reviews Disease Primers - Lupus nephritis is an autoimmune-mediated glomerulonephritis and a serious complication ...

www.nature.com

Reply on Twitter 2007780437549281342 Retweet on Twitter 2007780437549281342 55 Like on Twitter 2007780437549281342 165 Twitter 2007780437549281342

Lupus Europe @LupusEurope ·

31 Dec 2006305252983652583

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