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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
21 hours ago

🤩 May 10 is the #WorldLupusDay! And our Youth Group is commemorating it with a 𝐬𝐩𝐞𝐜𝐢𝐚𝐥 𝐰𝐞𝐛𝐢𝐧𝐚𝐫 focused on one of the most important and often overlooked topics for young people living with lupus: 𝐟𝐞𝐫𝐭𝐢𝐥𝐢𝐭𝐲 𝐚𝐧𝐝 𝐟𝐚𝐦𝐢𝐥𝐲 𝐩𝐥𝐚𝐧𝐧𝐢𝐧𝐠.

👩‍⚕️ How does lupus affect fertility?
💊 What should you consider before planning a pregnancy?
🧠 How can healthcare professionals better support young patients in these decisions?

This session brings together clinical expertise and real patient perspectives to provide clear, practical insights.

📅 𝐌𝐚𝐲 𝟏𝟎
⏰ 7 pm CET (i. e. Paris time)

🎙️ Speaker: Prof. Laura Andreoli
🗣️ Moderated by our Chair, Jeanette Andersen
👥 Organised with the Lupus Europe Youth Group

📌 Whether you are living with lupus, supporting someone who is, or working in healthcare, this webinar is for you.

👉 Don't wait any longer and register now! Send an email to secretariat@lupus-europe.org ... See MoreSee Less

🤩 May 10 is the #
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LUPUS EUROPE
4 days ago

🌈 Beyond what you’ve experienced, something awaits.

🌟 A new way to approach your consultation is coming.

Make your consultation count.

💥 Stay tuned

#MakeItCount ... See MoreSee Less

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LUPUS EUROPE
4 days ago

🆘 𝗦𝗸𝗶𝗻 𝗺𝗮𝘁𝘁𝗲𝗿𝘀 𝗶𝗻 𝗹𝘂𝗽𝘂𝘀.

🌍 The World Health Organisation has opened a public consultation on the draft Global Action Plan on Skin Diseases, a strategic framework that will guide governments in developing national plans on skin diseases.

🟣 Why is this important for the #lupus community?

👉 75–80% of people with SLE experience skin involvement. Skin lupus, including ACLE, SCLE and CDLE, has seen no new treatment options for over 80 years.

💬 This is an important opportunity to make sure that the voices of people living with lupus and the wider civil society community are heard.

📅 Deadline: 10 May- #WorldLupusDay
🔗 Add your voice and share with your community: www.who.int/news-room/articles-detail/public-consultation--draft-global-action-plan-on-skin-disea... ... See MoreSee Less

🆘 𝗦𝗸𝗶�
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LUPUS EUROPE
1 week ago

❤️‍🔥 Something big is coming...

... this #WorldLupusDay 🌍.

#makeitcount ... See MoreSee Less

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