30 Years ago, on May 26, 2019, LUPUS EUROPE’s Constitution (then under the name of ELEF) was signed… The European Lupus Federation was born. as we celebrate this anniversary, we asked current and past Chairs to reflect on those years in support of People living with lupus in Europe.

 

Yvonne Norton, Chair from 2002 to 2008: 

26th May 1989, certainly a date to remember – the birth of ELEF – European Lupus Erythematosus Federation with the motto “Uniting People with Lupus throughout Europe”.

September 2008, during the Convention in Palma de Mallorca when I was elected Chair, Council agreed to a name-change – ELEF became LUPUS EUROPE. The motto remained “Uniting People with Lupus throughout Europe”.

Over the years, I have been involved in many projects established by ELEF/LUPUS EUROPE, with the two major ones, from my point of view, being The Common Cause and Unmasking Lupus.

Both of these projects brought member countries together in two unique ways, one investigating the major problems caused by lupus as experienced by patients and the other demonstrating the effects of lupus depicted through art, such as painting, poetry, story-telling and photography. “Uniting People with Lupus throughout Europe”.

With Peter, my husband and former Treasurer of ELEF/LUPUS EUROPE, I have had the opportunity to travel throughout Europe to attend many conventions and conferences and the honour of meeting medics dedicated to easing the debilitating effects of lupus so enabling their patients to live happier and more comfortable lives. However, the greatest joy has come from meeting many, many people who live day-by-day with lupus (in all its forms), who smile and put on a cheerful exterior (while silently screaming with the pain they are feeling) to help others cope with their lupus and know they are not alone, whether they are in the same village, the same town or the same country…

Today, 30 years later, LUPUS EUROPE is still “Uniting People with Lupus throughout Europe”.

Yvonne Norton

 

 

Kirsten Lerström, Chair 2012-2017

Congratulations on the anniversary, young lady!

It has been a wonderful experience to be part of your growing up and development into the fine and vital organization of today. It has been a great honor to share happy as well as sad moments along the way with the most amazing group of dedicated people, I have ever met: the hardworking Trustees, admirable members, the inspiring and motivated colleagues in our global network and the formidable commitment, we have thrived on from our partners in industry and academia.

Thank you to all who has been there to enhance the voice of lupus to be heard!

Best and most heartfelt wishes for the next generation,

Kirsten

 

Jeanette Andersen, Current Chair

Today, May 26th, Lupus Europe can celebrate its 30th anniversary! A lot has happened in those 30 years. In 1989 there were no biologics to treat lupus and a pharma company would never think to involve patient “experts” in the research projects as equal partners. Not only do we now have the first biologic treatment directly approved for lupus, but many more are in the pipeline! At the same time researchers are increasingly asking to involve patients in the research and development of new treatments! The newly established Patient Advisory Network constantly gets requests from researchers, who can see the benefit of adding the patients´ point of view in their work. Hopefully, with this better understanding of the disease (both when it comes to patients and researchers) we will see more successful clinical trials and products with fewer side-effects.

Lupus Europe´s own research shows, that treatment is much more than medication. Patients also consider a healthy lifestyle, a balanced mind and positive surroundings to be part of their treatment. This means, that patients today are no longer simply taking their medication but are taking control over and responsibility of their own lives, which helps to give a higher quality of life and a more effective treatment.

It would not have been possible to reach this point without the continued efforts of the people who came before us. And the struggle is not over yet. Let´s all keep on fighting for A fulfilling life for all people with lupus in Europe, until we have reached a world without lupus!

Jeanette

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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!
2 weeks ago

#EULAR2025 is around the corner!

🦋 Lupus Europe plays a significant role in this year's Congress, with a diverse range of exciting topics and great participation.

✅ We will be sharing insights from most of the lupus sessions on X, so don't forget to follow us!

😃 Stay tuned!
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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