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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

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LUPUS EUROPE
2 weeks ago

🌈 The right to health is a basic human right. Everyone must have access to the health services they need when & where they need them without 💶 hardship.

😔 30% of the global population is not able to access essential health services.

#StandWithScience #WorldHealthDay #WHD2026 ... See MoreSee Less

🌈 The right to he
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LUPUS EUROPE
2 weeks ago

🚀 #LupusGPT & #EasyLupus are currently offline as we continue improving them.

🛠️You thought they couldn’t get better? We know they can, & we’re making it happen.

In the meantime, for reliable, multilingual lupus information👉 lupus100.org/

💜Thanks for your support! ... See MoreSee Less

🚀 #LupusGPT & #Ea
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LUPUS EUROPE
3 weeks ago

🎥 Did you miss our ELM 2026 Recap Webinar?

😃 Watch it now on our YouTube channel!

👉 Our Patient Advisory Network (PAN) members and volunteers share their key takeaways from the European Lupus Meeting 2026.

👉 Doctors and researchers explain, in a clear, short, and patient-friendly way, key messages from their talks.

🎯 Click the link below and discover the latest advances in lupus, explained directly by experts:

www.youtube.com/watch?v=Bw5Iptu-ZNc

More insights from #elm2026 coming soon. Stay tuned! ... See MoreSee Less

🎥 Did you miss ou
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