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 5,994 3,623

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

; SLEuro @SLEuroSociety ·

6 May 1787520249539043679

The 4th SLEuro Advanced Workshop on SLE was succesfully completed in Porto!
Keep up-to-date to register for the next Workshop! ⏰

Check out the past editions at the bottom of the following webpage: https://sleuro.org/advanced-workshop-on-sle/

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; Lupus Europe @LupusEurope ·

7 May 1787739960415592686

✅ Only 10% of #lupus patients are men.

‼️ However, their symptoms & disease burden may differ from those commonly reported by women.

🇪🇺 If you're a man with lupus in Europe, fill out this survey & help us better understand the real impact of SLE on men

https://buff.ly/3UMZkAQ

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; Matteo Piga @RMD_clinic ·

2 May 1786071896024342669

🟪May is #LupusAwarenessMonth 🟪

Raise #awareness about #lupus may increase early diagnosis ⏰ and consequently reduce its complications 🚨

Our review focuses on #SLE disease course providing actionable strategies for early diagnosis

OPEN ACCESS link ⬇️
https://www.sciencedirect.com/science/article/pii/S1521694224000093

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; Lupus Europe @LupusEurope ·

6 May 1787424179060387866

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

✍🏻Weź udział w ankiecie.

🔊Udostępnij w swojej społeczności.

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

https://s.surveylegend.com/-Nr1vl1sxwISBcDaeOzP

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Retweet on Twitter Lupus Europe Retweeted

; EULAR @eular_org ·

4 May 1786667062850396516

🌟Have you heard about RheumaFacts, the new initiative from EULAR Research?

👉Learn more about the initiative here!

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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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Live Facebook Feed

5 hours ago

🌍 This #WorldLupusDay, take part in a unique event specially tailored for young people living with lupus:

😃 "Lupus and Youth: A Dialogue between the Lupus Europe Youth Group and a Young Rheumatologist".

📆 May 10th.
🕖 19:00 CET (i. e. Paris time).

‼️ This is not just any webinar for the youth. It is a webinar made by youth for youth.

👀 So expect anything! This is why you cannot miss this date, whether you are young or not: understanding the worries and needs of young people with lupus is key to addressing their needs.

📧 Join us! Send an e-mail to secretariat@lupus-europe.org and secure your spot now.

www.lupus-europe.org/lupus-europe-youth-webinar/ ... See MoreSee Less

🌍 This #WorldLupusDay, take part in a unique event specially tailored for young people living with lupus:

😃 Lupus and Youth: A Dialogue between the Lupus Europe Youth Group and a Young Rheumatologist.

📆 May 10th.
🕖 19:00 CET (i. e. Paris time).

‼️ This is not just any webinar for the youth. It is a webinar made by youth for youth.

👀 So expect anything! This is why you cannot miss this date, whether you are young or not: understanding the worries and needs of young people with lupus is key to addressing their needs.

📧 Join us! Send an e-mail to secretariat@lupus-europe.org and secure your spot now.

https://www.lupus-europe.org/lupus-europe-youth-webinar/

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1 day ago

✅ While it's true that 9 out of 10 individuals diagnosed with #lupus are women, it's crucial to also reflect on the significant impact this disease has on men. Lupus does not discriminate, and understanding its effects on all genders is vital.

🌍 𝗠𝗲𝗻 𝗺𝗮𝘆 𝗳𝗮𝗰𝗲 𝘂𝗻𝗶𝗾𝘂𝗲 𝗰𝗵𝗮𝗹𝗹𝗲𝗻𝗴𝗲𝘀 𝗮𝗻𝗱 𝘀𝘆𝗺𝗽𝘁𝗼𝗺𝘀 that can differ from those typically reported by women and that is why we have included a specific section for men with lupus that has been created by men with lupus.

🇪🇺 If you are a 𝗺𝗮𝗻 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝗹𝘂𝗽𝘂𝘀 𝗶𝗻 𝗘𝘂𝗿𝗼𝗽𝗲, your participation in this survey is essential to help us better understand how lupus affects men.

Your insights can lead to better support and more effective interventions for all men affected by lupus.

🔊 Remember! This anonymous survey is available in 21 languages and will take no more than 10 minutes to complete.

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Blue and Black Gradient Abstract YouTube Intro Video (Vídeo para móviles).mp4

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2 days 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

s.surveylegend.com/-Nr1vl1sxwISBcDaeOzP ... See MoreSee Less

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likes love 8
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0 CommentsComment on Facebook

5 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

s.surveylegend.com/-Nudx9pGv-1XtZ6OnYWs ... See MoreSee Less

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likes love 8
Shares: 0
Comments: 0

0 CommentsComment on Facebook