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”.
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,
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!