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

Live Facebook Feed

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3 days ago
LUPUS EUROPE

Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus.

What is the question you should have asked and you didn't?

What is the question you think physicians should answer without being asked?

#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.
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Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus. 

What is the question you should have asked and you didnt?

What is the question you think physicians should answer without being asked?
 
#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.

Comment on Facebook

Qu'es le lupus ? Moi j'ai eu a " c'est un lupus...comme votre grand mère" point final Je me suis imaginer ,mes mains se déformer,me paralyser j'ai eu peur maintenant 7 ans plus tard bien-sûr chez changer d'internet me suis tourné vers un rhumatologue et centre des douleurs un nouveau immunosuppresseurs mais pas d'explication sur les effets secondaires a part pour le foie ... suspens es ce que mon corps va accepte ce médicament

Recording your appointment helps

Medication side effects short and long twem

6 days ago
LUPUS EUROPE

More good news for the #lupus commnunity!!

Voclosporin has been approved in Europe for the treatment of adults with active lupus nephritis in combination with a background immunosuppressive therapy regimen.

ir.auriniapharma.com/press-releases/detail/263/aurinia-announces-european-commission-approval-of
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6 days ago
LUPUS EUROPE

Date is set! And #Lupus100 is fast approaching.
If you haven't done yet, subscribe to our newsletter to get the latest updates!

www.lupus-europe.org/me-lupus/lupus-europe-info-centre/
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