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, 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
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Validated by Doctors and Patients
Pr.
Thierry MARTIN
Department of Clinical Immunology and Internal Medicine – New Civil Hospital – Strasbourg
Ms.
Johanna CLOUSCARD
President of Lupus France
Ms.
Géraldine CONDETTE-WOJTASIK
Education nurse – Hôpital Huriez – University of Lille 2 – Lille
Pr.
Camille FRANCES
Department of Dermatology-Allergy – Tenon Hospital – Paris
Dr.
Isabelle MELKI
Pediatric Department – Robert Debré Hospital – Paris
Pr.
Jacques-Eric GOTTENBERG
Rheumatology Department – Hautepierre Hospital – Strasbourg
Ms.
Daiva POIVILATE
Lupus Europe Patient Advisory Network – Lithuania
Ms.
Marianne RIVIÈRE
President of the AFL+ (French Association of Lupus and Other Autoimmune Diseases)
Ms.
Susan FRANKEL
Lupus Europe Patient Advisory Network – UK
Pr.
Eric DAUGAS
Nephrology Department – Bichat Hospital – Claude-Bernard – Paris
Dr.
Alexis MATHIAN
Department of Internal Medicine 2 – Pitié Salpêtrière Hospital – Paris
Pr.
Christophe RICHEZ
Rheumatology Department – Pellegrin Hospital Group – Bordeaux
Pr.
Pierre-Yves HATRON
Department of Internal Medicine – Hôpital Huriez – University of Lille 2 – Lille
Mr.
Davide MAZZONI
Lupus Europe Patient Advisory Network – Italy
Ms.
Susanne GYDESEN
Lupus Europe Patient Advisory Network – Denmark
Pr.
Nathalie COSTEDOAT-CHALUMEAU
Department of Internal Medicine – Cochin Hospital – Paris
Dr.
Christophe DELIGNY
Department of Internal Medicine – CHU Fort de France – Martinique
Ms.
Lucja WANICKA
Lupus Europe Patient Advisory Network – Austria
Ms.
Jeanette ANDERSEN
Chair LUPUS EUROPE – Denmark
Dr.
Noémie JOURDE-CHICHE
Department of Nephrology – Conception Hospital – Marseille
Dr.
Bruno RANCHIN
Nephrology Department – CHU Lyon
Dr.
Sandrine MORELL-DUBOIS
Department of Internal Medicine – Hôpital Huriez – University of Lille 2 – Lille
Ms.
Dalila TREMARIAS
Lupus Europe Patient Advisory Network – UK
Ms.
Kirsi MYLLYS
Lupus Europe Patient Advisory Network – Finland
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/).
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/).
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.
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.
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
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
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