LE Survey Centre - Lupus Europe

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Lupus Europe – Survey Centre

We want to share some key information and links that we found particularly relevant for people living with lupus in Europe. While we do our utmost to select credible sources of information and quality publications, the articles and links reflect the views of their authors rather than of LUPUS EUROPE.

LEAF - Lupus Expert system for the Assessment of Fatigue

Go to the LEAF tool for an assessment and personalised recommendations on improving fatigue

5 YES/NO questions on Clinical trials

A very short “YES or NO” questionnaire on clinical trials to focus next steps

Hydroxychloroquine Availability

Did you find HydroxyChloroquine last time you tried to buy it?

GRA COVID-19 Vax Survey

Help scientists understand how people with rheumatic disease make decisions regarding vaccines

Rheumatology Patient Survey

Help scientists raise awareness of the areas most important to you, where more support may be needed by taking part in the survey

OMERACT-Adherence Project

Help scientists understand the experiences of patients with RMDs (inc. lupus) around medication adherence

GRA COVID-19 Vax Survey

Help scientists understand how people with rheumatic disease make decisions regarding vaccines

Photolup Study

Help scientists understand photosensitivity in lupus better by taking part in the survey

ERN ReCONNET Survey

Tell scientists about the unmet needs of rare disease patients (inc. lupus) around pregnancy

GRA COVID-19 Vax Survey

Help scientists understand how people with rheumatic disease make decisions regarding vaccines

Photolup Study

Help scientists understand photosensitivity in lupus better by taking part in the survey

ERN ReCONNET Survey

Tell scientists about the unmet needs of rare disease patients (inc. lupus) around pregnancy

Lupus Europe STRATEGIES

LUPUS EUROPE • Intro

LUPUS EUROPE • Intro

Feb 21, 2019

LUPUS EUROPE • Research

LUPUS EUROPE • Research

Feb 21, 2019

LUPUS EUROPE • Members

LUPUS EUROPE • Members

Feb 21, 2019

LUPUS EUROPE • Heard

LUPUS EUROPE • Heard

Feb 21, 2019

Live Twitter Feed

Lupus Europe Follow 6,770 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.

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

Reply on Twitter 1921283477208486172 Retweet on Twitter 1921283477208486172 6 Like on Twitter 1921283477208486172 16 Twitter 1921283477208486172

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

Reply on Twitter 1921132127938056294 Retweet on Twitter 1921132127938056294 9 Like on Twitter 1921132127938056294 22 Twitter 1921132127938056294

; 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

Reply on Twitter 1921272618402918490 Retweet on Twitter 1921272618402918490 6 Like on Twitter 1921272618402918490 12 Twitter 1921272618402918490

; 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

Reply on Twitter 1921237626834526639 Retweet on Twitter 1921237626834526639 1 Like on Twitter 1921237626834526639 7 Twitter 1921237626834526639

Retweet on Twitter Lupus Europe Retweeted

; GlobalSkin @IADPO ·

10 May 1921188621811388876

💜 World Lupus Day – May 10 💜

Lupus impacts millions worldwide. Let’s push for better care, research, and early diagnosis.

Support the WHA Resolution on Skin Diseases to improve lives and end the burden.

#LupusAwareness #SkinDiseasesResolution #MakeLupusVisible

Reply on Twitter 1921188621811388876 Retweet on Twitter 1921188621811388876 3 Like on Twitter 1921188621811388876 6 Twitter 1921188621811388876

; Lupus Europe @LupusEurope ·

10 May 1921223038319599902

#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.

Let's raise awareness of the importance of an early diagnosis
#WorldLupusDay
#MakeLupusVisible
#Lupus100

Reply on Twitter 1921223038319599902 Retweet on Twitter 1921223038319599902 27 Like on Twitter 1921223038319599902 37 Twitter 1921223038319599902

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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

View on Facebook

likes love 27
Shares: 2
Comments: 0

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

View on Facebook

likes 25
Shares: 5
Comments: 2

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

View on Facebook

likes love 56
Shares: 14
Comments: 3

3 CommentsComment on Facebook