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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
1 day ago

🟪 Consultations don’t always leave enough time to cover everything that matters.

😩 Symptoms, concerns, and questions can quickly become overwhelming when living with lupus.

🍀 The Lupus Consultation Cards are designed to help you come prepared, prioritise what matters, and make the most of your time with your doctor.

✔️ Set your priorities
✔️ Organise your thoughts
✔️ Focus the conversation

🌍 Available in 18 languages
🔗 Download them for free: www.lupus-europe.org/lupus-consultation-cards/

🟣 Make your consultation count.
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LUPUS EUROPE
3 days ago

🦋 #WorldLupusDay is coming to an end!

❤️ Thank you all for the support you have shown throughout this important day, as people around the world have come together to raise awareness of the impact lupus can have.

🌈 At Lupus Europe, we believe there is something very important we also need to show the world: our vitality, our energy, and our will to enjoy life, take part, contribute, and be heard.

🌟 Our vision is a fulfilling life for all people with lupus in Europe, until we reach a world without lupus.

😃 We work hard. We show up. We support each other. We all live with lupus in different ways, even if our amazing Lupus Europe family sometimes seems to forget about it when we are at an event, in a meeting, or working together for the organisation.

🦋 Lupus is an invisible illness with many faces. Let’s close this #WorldLupusDay with our hopes, our laughter and our enthusiasm for life.

💬 That is why today we also want to remind you of our #MakeItCount campaign and the 𝐋𝐮𝐩𝐮𝐬 𝐂𝐨𝐧𝐬𝐮𝐥𝐭𝐚𝐭𝐢𝐨𝐧 𝐂𝐚𝐫𝐝𝐬.

These cards are designed to help people living with lupus prepare for medical appointments, organise their thoughts, identify what matters most, and make consultations more focused and meaningful.

🌺 Visit our website, download the Lupus Consultation Cards, and use them at your next appointment.

www.lupus-europe.org/lupus-consultation-cards/

Because your priorities, questions, and needs deserve a place in every consultation.
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