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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1 week ago
LUPUS EUROPE

🚨 Call for patients🚨

🔊 INSPIRE SURVEY from the University of Cambridge.

This survey aims to improve the understanding of neurological symptoms in SLE and other rheumatic conditions.

Lupus is a very heterogeneous disease, which means that it affects people of different ethnic backgrounds and gender in different ways.

That is why, to get accurate research results, as many different groups as possible must be represented in the sample.

The INSPIRE survey was launched last year to get the patient experience on the assessment/monitoring of neurological symptoms, but they received very few responses from people from ethnic minorities.

That is why the research team led by Dr Chris Wincup has launched a new survey.

The new INSPIRE survey can be completed by lupus patients or their carers from around the world.

🟣 Please share as much as possible 🟣 in order to get a sample that includes a good proportion of all ethnic groups.

Thank you!

bit.ly/inspire_patients_short
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Comment on Facebook

I did it a second time and no it went good till the end

The survey was demolished.

1 week ago
LUPUS EUROPE

Discoid lupus erythematosus (DLE) is the most common form of chronic cutaneous lupus erythematosus. It is characterised by persistent scaly plaques on the scalp, face, and ears, which can progress to scarring, atrophy, depigmentation, and permanent hair loss in affected hair-bearing areas (Source: DermNet).

This study, published by Prof Marca Mosca et al., describes 2 cases of severe and refractory DLE successfully treated with anifrolumab, a human monoclonal antibody.

Although anifrolumab has been recently approved for the treatment of SLE, data from randomized clinical trials have shown a significant difference in cutaneous response rate in patients treated with anifrolumab from those in the placebo group.

While the effectiveness of this treatment in real life and in different types of skin lesions has yet to be determined, it could represent a new valid opportunity for treating DLE.

jamanetwork.com/journals/jamadermatology/article-abstract/2798967
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Discoid lupus erythematosus (DLE) is the most common form of chronic cutaneous lupus erythematosus. It is characterised by persistent scaly plaques on the scalp, face, and ears, which can progress to scarring, atrophy, depigmentation, and permanent hair loss in affected hair-bearing areas (Source: DermNet). 

This study, published by Prof Marca Mosca et al., describes 2 cases of severe and refractory DLE successfully treated with anifrolumab, a human monoclonal antibody. 

Although anifrolumab has been recently approved for the treatment of SLE, data from randomized clinical trials have shown a significant difference in cutaneous response rate in patients treated with anifrolumab from those in the placebo group. 

While the effectiveness of this treatment in real life and in different types of skin lesions has yet to be determined, it could represent a new valid opportunity for treating DLE.

https://jamanetwork.com/journals/jamadermatology/article-abstract/2798967Image attachmentImage attachment
1 week ago
LUPUS EUROPE

We know some of you missed the great seminar recently delivered by Prof. Laurent Arnaud.

Well, no worries!

You have the chance to see it again, thanks to the European Federation of Internal Medicine (EFIM).

"Challenges in 2023 for Systemic Lupus Erythematosus".

Next 29th of March at 18:00 CET (i.e. Paris time).

Register for free here!

us02web.zoom.us/webinar/register/WN_O5yMwjfgTS29pMKvOZfgZw
... See MoreSee Less

We know some of you missed the great seminar recently delivered by Prof. Laurent Arnaud. 

Well, no worries! 

You have the chance to see it again, thanks to the European Federation of Internal Medicine (EFIM). 

Challenges in 2023 for Systemic Lupus Erythematosus.

Next 29th of March at 18:00 CET (i.e. Paris time).

Register for free here! 

https://us02web.zoom.us/webinar/register/WN_O5yMwjfgTS29pMKvOZfgZwImage attachment
1 week ago
LUPUS EUROPE

Did you miss this ERN RECONNET webinar with Lou Kawka and Prof Laurent Arnaud about #fatigue in #SLE?

Now you have the chance to watch it!!! 😃🙌

www.youtube.com/watch?v=7jc7SiP5BsA
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Did you miss this ERN RECONNET webinar with Lou Kawka and Prof Laurent Arnaud about #fatigue in #SLE? 

Now you have the chance to watch it!!! 😃🙌

https://www.youtube.com/watch?v=7jc7SiP5BsA
LUPUS EUROPE Uniting people with Lupus throughout Europe
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