About Jeanette

Jeanette Andersen has a Masters degree in German and Philosophy from the University of Copenhagen. In 2011 she was diagnosed with systemic lupus erythematosus, which (in combination with a lot of comorbidities) forced her to go into early retirement. Since then, she has immersed herself in the role of a volunteer in the area of rheumatology with a special focus on patient engagement in clinical research.

She is the Chair of Lupus Europe, a EUPATI trained patient expert on medicines Research & Development and the leader of the Lupus Europe Patient Advisory Network. She is also a patient representative (or e-PAG) and a Steering Committee Member in ERN ReCONNET as well as a trustee in the Danish Lupus group underneath Gigtforeningen (the Danish Rheumatism Association). She is a EULAR PARE Committee Member and Chair of the subcommittee on Education & Research as well as Leader of the Editorial Board and Edgar Stene Prize working groups. She also sits on the ACTion Council on patient engagement in rheumatology research.

She has developed an exercise programme for lupus patients, that has been endorsed by both ERN and EULAR and at present she is focussing on developing educational materials on better communication between doctors and patients.

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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�

🌍 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
LUPUS EUROPE Uniting people with Lupus throughout Europe
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