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 5,933 3,608

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

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; Laurent ARNAUD @Lupusreference ·

21 Apr 1782082790642839797

✅ #Rosacea versus #LUPUS ⬇️
Practical tips for distinguishing the 2 conditions 👍

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; Lupus Europe @LupusEurope ·

22 Apr 1782428279221195104

🚨𝗗𝗲𝗮𝗱𝗹𝗶𝗻𝗲 𝗔𝗽𝗽𝗿𝗼𝗮𝗰𝗵𝗶𝗻𝗴 𝗙𝗮𝘀𝘁❗

Please 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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; Laurent ARNAUD @Lupusreference ·

19 Apr 1781347561221009574

✅ Management of #glucocorticoids at the 4th advanced workshop on #Lupus by @SLEuroSociety by J Delgado Alves:
- Main mechanisms of action
- Optimal starting dose (organ- and severity driven)
- Tapering strategy (how fast/additional medications?)
- Stopping? (Yes/no/who?)

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; Donald Thomas, MD @lupuscyclopedia ·

18 Apr 1781049456458117278

🔥 #SLE #lupus patients: Be part of the conversation. Let your voice be heard.

What is it like living with lupus?

Help @LupusEurope learn more about lupus patients so the rest of us know what you are going through

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; Laurent ARNAUD @Lupusreference ·

19 Apr 1781214145993474455

✅ Today is the start of the 4th @SLEuroSociety Advanced #Lupus #Workshop, an event created when I became President of the European Lupus Society. We bring together 30 lucky participants + an amazing faculty for 2 days of intensive & collective discussion of complex #SLE cases 👍

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; Lupus Europe @LupusEurope ·

19 Apr 1781231778566434827

✍🏻Пройдіть опитування.

🔊Поділіться з вашою громадою.

👨🏼‍⚕Якщо ви медичний працівник і лікуєте пацієнтів з лупусом в Європі, ми були б дуже вдячні, якби ви поінформували своїх пацієнтів.

https://buff.ly/3xIyiBy

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; EUPATI @eupatients ·

17 Apr 1780599208841707623

📣 One week left to register for our online EUPATI Essentials Training! 📣
Are you an industry, academia or consortium member wanting to enhance your knowledge on patient engagement?
🎯 Register now ▶️ https://bit.ly/4auAmen
#EUPATI #Essentials #OnlineTraining #RegisterToday

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; Alberta Hoi @alberta_hoi ·

18 Apr 1780759680127791322

My absolute pleasure to work with @Lupusreference CC Mok and Talia for this nice review, prepared for the general medical community to better understand Dx challenge and Mx of SLE. Lots we can do to improve outcomes inc comorbidity burden! https://authors.elsevier.com/a/1ixq7V-4XOrME

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1 day ago

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

✍🏻Doe mee aan de enquête.

🔊Deel met uw gemeenschap.

🙏 Help us and NVLE achieve more answers to ensure that the Dutch population is represented in the results

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2 days ago

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

✍🏻Deltag i undersøgelsen.

🔊Del med dit fællesskab.

👨🏼⚕Hvis du er sundhedsprofessionel og behandler patienter med lupus i Europa, ville vi sætte stor pris på, at du informerer dine patienter.

🙏 Help us and Sle-Lupus- info achieve more answers to ensure that the Danish population is represented in the results

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3 days ago

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

✍🏻Dalyvaukite apklausoje.

🔊Dalinkitės savo bendruomenėje

👨🏼⚕Jeigu esate sveikatos priežiūros specialistas ir gydote vilklige sergančius pacientus Europoje, būtume labai dėkingi, jei informuotumėte savo pacientus.

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

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5 days ago

✍🏻Doe mee aan de enquête.

🔊Deel met uw gemeenschap.

👨🏼‍⚕Bent u een gezondheidsmedewerker en behandelt u lupuspatiënten in Europa, dan waarderen we het zeer als u uw patiënten deze informatie verstrekt.

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✍🏻Doe mee aan de enquête.

🔊Deel met uw gemeenschap.

👨🏼‍⚕Bent u een gezondheidsmedewerker en behandelt u lupuspatiënten in Europa, dan waarderen we het zeer als u uw patiënten deze informatie verstrekt.

https://s.surveylegend.com/-NqgyeOSaTVcd7gBoK15

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