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


Tell scientists about the unmet needs of rare disease patients (inc. lupus) around pregnancy

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5 days ago

As much as we love hearing from you all and appreciate the time you take to share how you #kicklupus and inspire others, we cannot allow any content specifically about healing products for lupus.

We would greatly appreciate if you followed this rule when posting on the page.
Thank you
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1 week ago

#WorldLupusDay finishes today, but #lupusawareness does not. There is so much more we can do to make life with #lupus better. Watch our vice chair, Anne Charlet, talk about her journey of becoming a Board Member.
You can also join us and become a volunteer
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Wauvvvv SO good looking :-)