FAQs

FAQs

Lupus is a widespread, chronic autoimmune disease that, for unknown reasons, causes the immune system to attack the body’s own connective tissues and organs. These can include joints, kidneys, heart, lungs, brain, blood, muscles and skin. To find out more, go to Lupus100

There are an estimated 350,000 people in Europe with lupus. More than five million people are affected worldwide.

Nine out of ten of those affected are women.

80% of the newly diagnosed are between the ages of 15 and 45.

Certain ethnicities are more likely to develop lupus than others.

No-one knows the true causes of lupus. However genetic and environmental factors play a role. For example, some known triggers are photosensitivity, smoking, cardio-vascular diseases, etc.
To find out more, go to Lupus100

Symptoms include fever, fatigue, loss of appetite, rashes, hair loss (alopecia), swollen glands, sensitivity to light (photosensitivity), joint pain, pericarditis, pleurisy, kidney disease, cognitive problems and others.

No two cases of lupus are the same. Symptoms and severity differ from person to person and even from day to day.

To find out more, go to Lupus100

There is no cure for lupus. Typical treatments include fast-acting steroids (like Prednisolone), which are usually used for the shortest possible period or at the lowest possible dose, together with maintenance medication which acts longer-term, such as anti-malarials, to which immunosuppressants can be added when needed. In June 2012, Belimumab became the first EMA-approved lupus drug treatment in over 50 years. With good management and adherence to medication, lupus can be well controlled for the majority of people.

If left untreated, lupus is potentially fatal. Lupus can lead to organ damage and failure. Serious conditions that can arise include kidney disease, pancreatitis, pleurisy, vasculitis, pericarditis, and cancer.

To find out more, go to Lupus100

Lupus is one of Europe’s less known chronic, serious diseases. While lupus is rare in some European countries, it is less so in others. Awareness and accurate knowledge about it lags decades behind many other illnesses.

Being a knowledgeable partner in the doctor-patient relationship will help you to self-manage your lupus better and have a better quality of life.

Living a full life with lupus is possible for some, but doing so relies heavily on early diagnosis and consistent treatment.

Studies have produced estimates, that approximately 1 – 8 people per 100,000 are diagnosed with lupus each year.

There are many treatments for lupus’ symptoms, but there is no cure… at least not yet!

Lupus is a widespread, chronic autoimmune disease that, for unknown reasons, causes the immune system to attack the body’s own connective tissues and organs. These can include joints, kidneys, heart, lungs, brain, blood, muscles and skin.

There are an estimated 500,000 people in Europe with lupus (EULAR). More than five million people are affected worldwide.

Nine out of ten of those affected are women.

80% of the newly diagnosed are between the ages of 15 and 45.

Certain ethnicities are more likely to develop lupus than others.

No-one knows the true causes of lupus. However genetic and environmental factors play a role. For example, some known triggers are photosensitivity, smoking, cardio-vascular diseases, etc.

Symptoms include fever, fatigue, loss of appetite, rashes, hair loss (alopecia), swollen glands, sensitivity to light (photosensitivity), joint pain, pericarditis, pleurisy, kidney disease, cognitive problems and others.

No two cases of lupus are the same. Symptoms and severity differ from person to person and even from day to day.

There is no cure for lupus. Typical treatments include fast-acting steroids (like Prednisolone), which are usually used for the shortest possible period or at the lowest possible dose, together with maintenance medication which acts longer-term, such as anti-malarials, to which immunosuppressants can be added when needed. In June 2012, Benlysta became the first EMA-approved lupus drug treatment in over 50 years. With good management and adherence to medication, lupus can be well controlled for the majority of people.

If left untreated, lupus is potentially fatal. Lupus can lead to organ damage and failure. Serious conditions that can arise include kidney disease, pancreatitis, pleurisy, vasculitis, pericarditis, and cancer.

Lupus is one of Europe’s less known chronic, serious diseases. While lupus is rare in some European countries, it is less so in others. Awareness and accurate knowledge about it lags decades behind many other illnesses.

Being a knowledgeable partner in the doctor-patient relationship will help you to self-manage your lupus better and have a better quality of life.

Living a full life with lupus is possible for some, but doing so relies heavily on early diagnosis and consistent treatment.

Studies have produced estimates, that approximately 1 – 8 people per 100,000 are diagnosed with lupus each year.

There are many treatments for lupus’ symptoms, but there is no cure… at least not yet!

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❤️‍🔥 Something big is coming...

... this #WorldLupusDay 🌍.

#makeitcount
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📣 Register now by sending an email to secretariat@lupus-europe.org, and don't miss our Youth Group Webinar!

❞𝗙𝗲𝗿𝘁𝗶𝗹𝗶𝘁𝘆 𝗮𝗻𝗱 𝗳𝗮𝗺𝗶𝗹𝘆 𝗽𝗹𝗮𝗻𝗻𝗶𝗻𝗴 𝗳𝗼𝗿 𝘆𝗼𝘂𝗻𝗴 𝗽𝗲𝗼𝗽𝗹𝗲 𝘄𝗶𝘁𝗵 𝗹𝘂𝗽𝘂𝘀❞

🌟 What should young people know? What questions do young people have?
🌟 Key information to support informed decisions and future planning

🖥️ In this online webinar, Lupus Europe’s Youth Group will host an open, evidence-based discussion with Prof. Laura Andreoli on lupus, lupus treatments, fertility, pregnancy planning, and reproductive health in young people.

The session will address real questions from young lupus patients, providing clear, practical information to support communication and decision-making between patients and healthcare professionals.

🗣️ Moderated by Jeanette Andersen

Save the date!

🗓️ May 10, 2026
⏰ 19:00 CET (i. e. Paris time)
💻 Zoom
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📣 Register now by

💧 You’ve probably heard about “liquid biopsy”, a promising concept in lupus research.

But do you actually know what it means?
And why is everyone talking about it?

🤔 Could it help detect lupus nephritis and keep track of how it evolves using less invasive methods?

In this short video from our #ELM2026 series, Dr Andrea Fava breaks it down in a clear and patient-friendly way.

🎥 Watch the video and find out!

youtu.be/GnRbBK7x5hs?si=DzGfLGNW0tp_UMn-

🚨 Don't miss out and visit the #ELM2026 playlist with all videos in the "Video on Demand" section of our website! www.lupus-europe.org/videos-on-demand/

🙏 Thank you, Dr Andrea Fava, for your generosity in taking the time to share your knowledge in such a clear and accessible way, helping bring complex medical information closer to people living with lupus.
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💧 You’ve probab

📅 𝗠𝗮𝗿𝗸 𝘆𝗼𝘂𝗿 𝗰𝗮𝗹𝗲𝗻𝗱𝗮𝗿❗

🤩 Lupus Europe is excited to invite you to a unique event on World Lupus Day:

🧑‍💻 “Fertility, family planning for young lupus patients”

🚀 𝗔 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝗼𝗿𝗴𝗮𝗻𝗶𝘀𝗲𝗱 𝗮𝗻𝗱 𝗹𝗲𝗱 𝗯𝘆 the Lupus Europe 𝗬𝗼𝘂𝘁𝗵 𝗚𝗿𝗼𝘂𝗽.

📆 10th of May.
🕖 19:00 h CET.

🙌 A space dedicated to discussing issues that impact young people, by young and for young people.

This event is a tremendous opportunity to connect, learn, and share experiences related to lupus from the perspective of young people.

👩‍⚕️ Joining us will be Prof Laura Andreoli, who will answer your questions and engage in meaningful conversation with Lynette, Makya, Marina and Rita from the Lupus Europe Youth Group.

Moderated by our Chair, Jeanette Andersen.

‼️Register now by sending an e-mail to secretariat@lupus-europe.org‼️
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📅 𝗠𝗮𝗿�