There is still so much to learn about lupus in Europe. One of the ways this is happening is through surveys. Some are organised by LUPUS EUROPE, others by the European reference Networks or our partners, others by academics or other member groups… To help you contribute, we have assembled here some of the surveys currently available. Don’t hesitate to click on the respective links to provide your input to all!

Hydroxychloroquine Availability

Did you find HydroxyChloroquine last time you tried to buy it?

5 YES/NO questions on Clinical trials

A very short ``YES or NO`` questionnaire on clinical trials to focus next steps

Rare Barometer

Help EURORDIS communicate facts and figures to decision makers on the future of rare diseases (incl. lupus), so that your voice is heard

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

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🤩 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
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🤩 May 10 is the #

🌈 Beyond what you’ve experienced, something awaits.

🌟 A new way to approach your consultation is coming.

Make your consultation count.

💥 Stay tuned

#MakeItCount
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🆘 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...
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🆘 𝗦𝗸𝗶�

❤️‍🔥 Something big is coming...

... this #WorldLupusDay 🌍.

#makeitcount
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