About Elfriede

Elfriede is from the Netherlands, she was diagnosed with CDLE (skin Lupus) in 2000 after having wrong diagnosis several times. Since her diagnosis, living with Lupus on a daily base as meaningful as possible, became her challenge. Not just for herself but for Lupus patients in general.

This is also her motivation to join the Lupus Europe Board.

Elfriede has a bachelor’s degree in Social Work and a postgraduate degree in Service Management. She has worked for a long time as manager in several organizations for the homeless, residential youth care and crisis and disaster relief.

Elfriede founded her own company 6 years ago, together with a number of colleagues.

The company develops and produces innovative sun protection products for people with sun-related conditions. In addition, she gives presentations about living with UV-sensitive skin.

As a volunteer, Elfriede has experience within other patient associations, and as a member of the communications group in Lupus Europe

Elfriede is particularly interested in all aspects of patient empowerment and in Skin Lupus, in particular the overlap in symptoms between patients with Skin Lupus and SLE.

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13 minutes ago

🤩 #EULAR2025 has been a blast!

If you missed it (or want to relive the highlights), join us for our EULAR 2025 Recap Webinar!

📅 July 10
🕖 18:00 CET
📍 Zoom

✅ Register by sending an email to secretariat@lupus-europe.org and get to know some of the latest insights, data & key messages from the 2025 EULAR Congress!

Don’t miss it!
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2 days ago

🏆 We’re thrilled to announce that #LupusGPT has won the PFMD #MadeWithPatients Award 2025 as Best Emerging Innovation!

🌍A huge moment for Lupus Europe & the European #lupus community — proving what’s possible through true patient innovation and collaboration.

😃Celebrating at #EULAR2025!

#PEOF2025
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1 week ago

🏆 This Wednesday, we will find out if LupusGPT will win the PFMD Made with Patients Award 2025!

🎉 Join us in this exciting moment for the lupus community by watching the ceremony live online (registration is available at the link provided in our blog post).

👉 If you still don’t know what this huge achievement means, read our latest blog post, where you will also find the link to register for the live ceremony at the Patient Engagement Open Forum (PEOF).

💜 Created by patients, for patients, #LupusGPT and #EASYLupus are already breaking barriers in access to reliable, multilingual lupus information. Check the tool out and explore how easy it is to access valid and clear lupus information in your language.

Remember! All the information and links are available in our latest blog post!

www.lupus-europe.org/lupusgpt-made-with-patients-awards-2025/
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2 weeks ago

🟣 LUPUS-ALERT is moving forward!

Thanks to the amazing collaboration between healthcare professionals and patients, we’ve now identified many potential vulnerabilities that can impact access to appropriate lupus care.

We want to extend a special thank you to all the lupus patients who responded to our call and shared the barriers patients may face: financial, social, linguistic, geographic…

🌟 Your contribution is helping to develop a tool that will systematically identify the vulnerabilities patients face. This is a wonderful step towards lupus care that is more holistic, equitable, personalised, and responsive to patients' real-life needs.

🔝 A huge thank you to Prof. Laurent Arnaud, Dr. Daniel Guimarães de Oliveira - Imunologia Clínica, Jeanette Andersen, and Zoe Karakikla-Mitsakou for their invaluable contributions and commitment to LUPUS-ALERT!

🌍 And a special thank you to the many physicians and patients who have come together to work on this project for the benefit of lupus patients.

🚀 #LupusAlert now moves into Step 2!!!

🔔 Stay tuned!
... See MoreSee Less

🟣 LUPUS-ALERT is moving forward!

Thanks to the amazing collaboration between healthcare professionals and patients, we’ve now identified many potential vulnerabilities that can impact access to appropriate lupus care. 

We want to extend a special thank you to all the lupus patients who responded to our call and shared the barriers patients may face: financial, social, linguistic, geographic… 

🌟 Your contribution is helping to develop a tool that will systematically identify the vulnerabilities patients face. This is a wonderful step towards lupus care that is more holistic, equitable, personalised, and responsive to patients real-life needs.

🔝 A huge thank you to Prof. Laurent Arnaud, Dr. Daniel Guimarães de Oliveira - Imunologia Clínica, Jeanette Andersen, and Zoe Karakikla-Mitsakou for their invaluable contributions and commitment to LUPUS-ALERT!

🌍 And a special thank you to the many physicians and patients who have come together to work on this project for the benefit of lupus patients.

🚀 #LupusAlert now moves into Step 2!!!

🔔 Stay tuned!
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