LE Survey Centre - Lupus Europe

Use your free time to take survey from Lupus Europe

Click here to subscribe

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 7,197 4,279

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 ·

12 Mar 2032172907816714567

✅ For all questions about #lupus, remember you can visit #LupusGPT & #EasyLupus: multilingual AI tools developed by Lupus Europe, powered by 🔝sources including #Lupus100.

🌐 Visit https://f.mtr.cool/adnlzftnyx & https://f.mtr.cool/ozemfhjjsl for reliable answers to your lupus questions!

Reply on Twitter 2032172907816714567 Retweet on Twitter 2032172907816714567 2 Like on Twitter 2032172907816714567 4 Twitter 2032172907816714567

Lupus Europe @LupusEurope ·

12 Mar 2032144336565960916

🌟Your physician is the best source of information. Turn to them for information on early signs of kidney disease & what to do if you spot any.

✅ You will get your kidney function assessed in every check-up visit. Never skip one, even if you feel ok.

#WorldKidneyDay

Reply on Twitter 2032144336565960916 Retweet on Twitter 2032144336565960916 1 Like on Twitter 2032144336565960916 2 Twitter 2032144336565960916

Lupus Europe @LupusEurope ·

12 Mar 2032113514676953490

Prevention is key! There are many ways to take care of your kidneys:
1️⃣ Have an active life 🚶‍♂️ 🏃‍♀️
2️⃣ Don't smoke 🚭
3️⃣ Have a healthy diet 🥗 🍏
4️⃣ Check & control your blood sugar & blood pressure
5️⃣ Take appropriate fluid intake
6️⃣ Don't take NSAIDs regularly
#WorldKidneyDay

Reply on Twitter 2032113514676953490 Retweet on Twitter 2032113514676953490 2 Like on Twitter 2032113514676953490 3 Twitter 2032113514676953490

Lupus Europe @LupusEurope ·

12 Mar 2032092231872413774

🚨 #Kidney disease is a silent illness. Getting to recognise its symptoms is key to getting an early diagnosis and preventing potential complications:

1️⃣ Urine changes (in frequency or colour)
2️⃣ Swelling in 🤲 🦶 🦵
3️⃣ Foamy urine
4️⃣ High blood pressure

#WorldKidneyDay

Reply on Twitter 2032092231872413774 Retweet on Twitter 2032092231872413774 2 Like on Twitter 2032092231872413774 0 Twitter 2032092231872413774

Lupus Europe @LupusEurope ·

12 Mar 2032052116773114021

‼️ Although #lupus nephritis remains one of the most serious complications for #SLE patients, early diagnosis and adequate treatment make remission possible in many cases.

✅ To achieve this, it is crucial that patients do not skip their routine check-ups.

#WorldKidneyDay

Reply on Twitter 2032052116773114021 Retweet on Twitter 2032052116773114021 2 Like on Twitter 2032052116773114021 3 Twitter 2032052116773114021

Lupus Europe @LupusEurope ·

12 Mar 2032030818638364866

🚨 It is estimated that about 40% of #SLE patients will suffer from #lupus nephritis: one of the most dangerous & frequent complications of SLE- Carmona L. et al.

✅ Routine check-ups and early detection of symptoms are key to an early diagnosis.

#WorldKidneyDay

Reply on Twitter 2032030818638364866 Retweet on Twitter 2032030818638364866 3 Like on Twitter 2032030818638364866 5 Twitter 2032030818638364866

Retweet on Twitter Lupus Europe Retweeted

Laurent ARNAUD @Lupusreference ·

11 Mar 2031773973952786861

✅ The final version of the #SLAKE paper, the Systemic #Lupus Assessment of essential Knowledge instrument, is now published online at https://doi.org/10.1093/rheumatology/keaf649
Thank you all for your support and your participation 👍

Reply on Twitter 2031773973952786861 Retweet on Twitter 2031773973952786861 15 Like on Twitter 2031773973952786861 59 Twitter 2031773973952786861

Retweet on Twitter Lupus Europe Retweeted

Laurent ARNAUD @Lupusreference ·

8 Mar 2030591699194421625

✅ Key messages from the 'early #Lupus diagnosis' fishball at #ELM2026
- Early diag particularly important for non-severe patients (because severe often diag quickly)
- #Redflags/education for GPs is key
-Access to care/rethinking pathways
-Role for biomarkers (e.g. ANA+IFN)

Reply on Twitter 2030591699194421625 Retweet on Twitter 2030591699194421625 14 Like on Twitter 2030591699194421625 47 Twitter 2030591699194421625

Load More

Live Facebook Feed

Photos from Natalia Tong-Ochoa's post ... See MoreSee Less

Image attachment

Image attachment

View on Facebook

View Comments likes love 8 0 Comments: 0

0 CommentsComment on Facebook

✅ For all questions about #lupus, remember you can visit #LupusGPT & #EasyLupus: multilingual AI tools developed by Lupus Europe, powered by 🔝sources including #Lupus100.

🌐 Visit lupusgpt.org/ & easy.lupusgpt.org/ for reliable answers to your lupus questions! ... See MoreSee Less

✅ For all question

View on Facebook

View Comments likes love 9 5 Comments: 0

0 CommentsComment on Facebook

🔴 Although lupus nephritis remains one of the most serious complications for SLE patients, early diagnosis and adequate treatment make remission possible in many cases ✅.

🦋 Kidney disease is a silent illness. Getting to recognise its symptoms is key to getting an early diagnosis and preventing potential complications:

1️⃣ Urine changes (in frequency or colour)
2️⃣ Swelling in 🤲 🦶 🦵
3️⃣ Foamy urine
4️⃣ High blood pressure

Prevention is key! There are many ways to take care of your kidneys:
1️⃣ Have an active life 🚶‍♂️ 🏃‍♀️
2️⃣ Don't smoke 🚭
3️⃣ Have a healthy diet 🥗 🍏
4️⃣ Check & control your blood sugar & blood pressure
5️⃣ Take the appropriate fluid intake
6️⃣ Don't take NSAIDs regularly

#WorldKidneyDay
#KidneyHealthforAll ... See MoreSee Less

Image attachment

Image attachment

Image attachment

Image attachment

View on Facebook

View Comments likes 4 1 Comments: 0

0 CommentsComment on Facebook

🚨 Today is #WorldKidneyDay! And we are supporting the World Kidney Day campaign.

People with kidney disease are among the most vulnerable people in an emergency because of their ongoing need for consistently coordinated care, which is often lifelong and involves complex ongoing treatment.

🦋 It is estimated that about 40% of #SLE patients will suffer from #lupus nephritis: one of the most dangerous and frequent complications of #SLE. Routine check-ups and early detection of symptoms are key for getting an early diagnosis.

#kidneyhealthforall ... See MoreSee Less

Image attachment

Image attachment

View on Facebook

View Comments likes 7 4 Comments: 0

0 CommentsComment on Facebook