In September, during the LUPUS EUROPE convention, we were delighted to welcome Jeanette Andersen to the board. She has written a little introduction for those who don’t already know her from her work in LUPUS EUROPE and Young PARE.

JeanetteAndersen04 head shot

“I was diagnosed with SLE in 2011, although I had had symptoms of the disease since the year 2000. I have a master´s degree in German and Philosophy from the University of Copenhagen and was a teacher in higher education until 2012.

Since I had to stop working in 2012, I have dedicated my time and energy to volunteer work for Lupus Denmark. In addition, I am a EULAR Young PARE working group member and now also on the LUPUS EUROPE board of trustees.

SLE has changed my life from a very active one, with a full-time job and a lot of fitness in my spare time to a condition, where I am immobilised in a wheelchair and can work only a few hours a week. Despite the disease casting a shadow over my life, my positive attitude and outlook has made me find a new purpose and meaning in life by helping other people with lupus all across Europe.

Unfortunately, I have been in the hospital a lot for my beginnings on the LUPUS EUROPE board, but hopefully things will change for the better and I will be able to be more active in the near future. For now, my two main focuses in LUPUS EUROPE are on the young lupus patients and communication to our members.”

 

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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
LUPUS EUROPE Uniting people with Lupus throughout Europe
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