About being a trustee – Katharine’s story

Here is our second ‘Trustee story’, this time from Katharine.  When I was first diagnosed, I didn’t even know that there was a patient association in my country, let alone a European umbrella organisation working towards common goals on behalf of other European associations. I haven’t been able to work for a few years due […]

Meet the Lupus World at the ICL in Vienna

Today is World Lupus Day, a great time to be thinking about bringing the Lupus World together.  ‘Meet the Lupus World’ is our theme for the Lupus Summit in Vienna on 5th September 2015. The summit will take place as an integral part of our annual convention. Make sure your group is represented by getting in touch with […]

LUPUS EUROPE needs YOU!

If you are a member of one of LUPUS EUROPE’s member organisations and are interested in getting more involved as a patient advocate – spreading awareness, attending events, working on specific projects… we would love to hear from you. Even if you can only offer a little of your time, your contribution could make a […]

EUPATI Patients’ academy

Interview with Jan Geisler, director of EUPATI, on the Patients’ Academy. He answers questions such as: “What is the goal of EUPATI?” “Why did you feel it was necessary to create such an academy?” “What is the profile of the students enrolled in the EUPATI course?” “What will they (the students) learn?” To view the […]

World Lupus Day sees first French lupus-only conference!

The 10th and 11th of May 2015, the Immunopathology and Medicinal Chemistry laboratory of the CNRS and the University of Strasbourg, Faculty of Medicine will organize the first French conference dedicated exclusively to Lupus. Held in Strasbourg, France, the conference registration is free for patients, who just need to sign-up. The message from the organizers, professors Sylviane […]

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🌍 This month in our #1Month1Study campaign, we highlight our “Living with systemic lupus erythematosus in 2020: a European patient survey”, published in Lupus Science & Medicine.

This large-scale study, conducted by Lupus Europe was led by Alain Cornet, Jeanette Andersen, Kirsi Myllys, Angela Edwards with the incredible support of Prof. Laurent Arnaud. The study analysed data from 4,375 patients across 35 European countries, providing one of the most comprehensive overviews of the burden of SLE in Europe from the patient perspective.

✅ Key findings include:

•⁠ ⁠A median diagnosis delay of 2 years, highlighting persistent gaps in early recognition.
•⁠ ⁠A high symptom burden, with a median of 9 symptoms per patient.
•⁠ ⁠Significant impact on education, employment, and daily functioning.
•⁠ ⁠Marked inequalities in access to care across countries.

📌 These data underline the importance of integrating the patient perspective into clinical practice, research, and health policy to improve outcomes in this complex disease.

doi.org/10.1136/lupus-2020-000469

😃 Stay tuned as we break down these findings throughout the month and explore what they mean for people living with lupus across Europe.

This study would not have been possible without the active support and dissemination of Lupus Europe National Members across Europe. A huge thank you to all National Members and to all who supported and disseminated the study, for making this possible for the lupus community.
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🌍 This month in o

🌈 The right to health is a basic human right. Everyone must have access to the health services they need when & where they need them without 💶 hardship.

😔 30% of the global population is not able to access essential health services.

#StandWithScience #WorldHealthDay #WHD2026
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🌈 The right to he

🚀 #LupusGPT & #EasyLupus are currently offline as we continue improving them.

🛠️You thought they couldn’t get better? We know they can, & we’re making it happen.

In the meantime, for reliable, multilingual lupus information👉 lupus100.org/

💜Thanks for your support!
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🚀 #LupusGPT & #Ea