Lupus 100

Find reliable, quality answers on the 100 most frequent questions about lupus, written by leading lupus doctors in collaboration with patients

Lupus 100

Find reliable, quality answers on the 100 most frequent questions about lupus, written by leading lupus doctors in collaboration with patients

100 QUESTIONS TO ASK ABOUT LUPUS

People living with lupus and their relatives, nurses, medical students or even for non-specialist doctors are regularly confronted with questions about lupus, the disease with 1000 faces. While some will have access to validated information, too many will end up on the internet, where “word of mouth”, uncontrolled data, rumours or unconfirmed research will increase their confusion, create anxiety or even lead them to incorrect actions.

In 2010, under the lead of Professor Maxime Dougados,  the French centres of reference on lupus addressed this issue through the publication of booklet “100 questions about lupus”. This booklet was quickly successful amongst patients and patient associations, in France and the neighbouring French speaking countries. As the knowledge about lupus continued to progress, the book was updated on several occasions, each time with the cooperation between French renowned lupus experts and patient associations.

Most Popular Questions around Lupus

Tackling Lupus from Every Direction

What is lupus

LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across Europe. We are a non profit independent organisation.

$790 million

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896+

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Partner organisations

Validated by Doctors and Patients

2-1

Ms.

Susanne GYDESEN

Lupus Europe Patient Advisory Network – Denmark

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Pr.

Thierry MARTIN

Department of Clinical Immunology and Internal Medicine – New Civil Hospital – Strasbourg

Pr.

Christophe RICHEZ

Rheumatology Department – Pellegrin Hospital Group – Bordeaux

2-1

Ms.

Johanna CLOUSCARD

President of Lupus France

2-1

Ms.

Géraldine CONDETTE-WOJTASIK

Education nurse – Hôpital Huriez – University of Lille 2 – Lille

1

Mr.

Davide MAZZONI

Lupus Europe Patient Advisory Network – Italy

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Pr.

Camille FRANCES

Department of Dermatology-Allergy – Tenon Hospital – Paris

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Dr.

Isabelle MELKI

Pediatric Department – Robert Debré Hospital – Paris

2-1

Ms.

Marianne RIVIÈRE

President of the AFL+ (French Association of Lupus and Other Autoimmune Diseases)

2-1

Ms.

Kirsi MYLLYS

Lupus Europe Patient Advisory Network – Finland

1

Ms.

Daiva POIVILATE

Lupus Europe Patient Advisory Network – Lithuania

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Dr.

Noémie JOURDE-CHICHE

Department of Nephrology – Conception Hospital – Marseille

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Dr.

Sandrine MORELL-DUBOIS

Department of Internal Medicine – Hôpital Huriez – University of Lille 2 – Lille

2-1

Ms.

Lucja WANICKA

Lupus Europe Patient Advisory Network – Austria

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Dr.

Christophe DELIGNY

Department of Internal Medicine – CHU Fort de France – Martinique

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Pr.

Pierre-Yves HATRON

Department of Internal Medicine – Hôpital Huriez – University of Lille 2 – Lille

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Pr.

Eric DAUGAS

Nephrology Department – Bichat Hospital – Claude-Bernard – Paris

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Pr.

Nathalie COSTEDOAT-CHALUMEAU

Department of Internal Medicine – Cochin Hospital – Paris

2-1

Ms.

Susan FRANKEL

Lupus Europe Patient Advisory Network – UK

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Dr.

Alexis MATHIAN

Department of Internal Medicine 2 – Pitié Salpêtrière Hospital – Paris

2-1

Ms.

Dalila TREMARIAS

Lupus Europe Patient Advisory Network – UK

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Pr.

Jacques-Eric GOTTENBERG

Rheumatology Department – Hautepierre Hospital – Strasbourg

2-1

Ms.

Jeanette ANDERSEN

Chair LUPUS EUROPE – Denmark

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Dr.

Bruno RANCHIN

Nephrology Department – CHU Lyon

A hundred questions that we can ask ourselves concerning lupus…

The 100 questions initiative is a wonderful example of what cross-border collaboration among different stakeholders, such as the European reference Networks, can bring to people living with rare and low-prevalence diseases in Europe. At the end of the project, we expect that virtually all people with lupus in Europe will have access to the same high-quality information in a language they understand well. The idea is to replicate this initiative for the other diseases covered by ERN ReCONNET. (link to https://reconnet.ern-net.eu/).

Marta Mosca
ERN ReCONNET Leader, Professor of Rheumatology – University of Pisa

The 100 questions initiative is a wonderful example of what cross-border collaboration among different stakeholders, such as the European reference Networks, can bring to people living with rare and low-prevalence diseases in Europe. At the end of the project, we expect that virtually all people with lupus in Europe will have access to the same high-quality information in a language they understand well. The idea is to replicate this initiative for the other diseases covered by ERN ReCONNET. (link to https://reconnet.ern-net.eu/).

Marta Mosca
ERN ReCONNET Leader, Professor of Rheumatology – University of Pisa

The lupus in 100 questions is the result of excellent collaboration. Collaboration between doctors and patients, to bring trusted medical information answering key patient questions in a format that meets people´s needs, collaboration across borders to reach all people living with lupus in Europe, and collaboration with the readers as they can raise questions in our contact page, from where we will select new questions to be included… Also, a big thank you to our French friends who have allowed us to reuse much of their work as a starting point for this European expansion.

Jeanette Andersen
Chair Lupus Europe

The lupus in 100 questions is the result of excellent collaboration. Collaboration between doctors and patients, to bring trusted medical information answering key patient questions in a format that meets people´s needs, collaboration across borders to reach all people living with lupus in Europe, and collaboration with the readers as they can raise questions in our contact page, from where we will select new questions to be included… Also, a big thank you to our French friends who have allowed us to reuse much of their work as a starting point for this European expansion.

Jeanette Andersen
Chair Lupus Europe

Finally, there is one place where I can find answers that I can trust to the many questions I have about my lupus. Until now, I was always wondering about the quality of the information I could find on internet or social media. I knew some was clearly wrong, but for the rest… Now I know I can trust these answers, written by leading doctors specialised in lupus, and checked both by their peers and by people that, like me, live with lupus

Zoe Karakikla – Mitsakou
Person living with lupus

Finally, there is one place where I can find answers that I can trust to the many questions I have about my lupus. Until now, I was always wondering about the quality of the information I could find on internet or social media. I knew some was clearly wrong, but for the rest… Now I know I can trust these answers, written by leading doctors specialised in lupus, and checked both by their peers and by people that, like me, live with lupus

Zoe Karakikla – Mitsakou
Person living with lupus

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