20th annual European Congress of Rheumatology took place in Madrid in June 2019. The Congress was hosted by the European League Against Rheumatism (EULAR) and jointly organised with the Paediatric Rheumatology European Society (PReS). There were 14,500 attendees from 120 countries and the scientific programme included presentations from 4,900 abstracts submitted.

Three Trustees attended the Congress to hear the latest news in Lupus research and to represent Lupus Europe and network with different partners; industry, researchers, physicians, patients, HCPs etc. (i.e. from our Lupus Europe booth).

Our Chair Jeanette Andersen gave two presentations at the PARE session called: Should we worry about anything else – also young people have multi-morbidities. The first presentation was called “Diseases on sale – how I deal with all my conditions”, the second one was on the “Lupus Europe Youth Panel – what we learned from young people living with lupus”. She also presented a poster on her Exercise program for lupus patients.

 

In the scientific programme Ronald von Vollenhoven presented about the success of Phase 2b Global Clinical Trial of Ustekinumab (UST) for SLE that started in 2018. The SLE Responder Index SRI showed the best result – UST 62% compared with placebo 33%. Most improvement was noticed after week 24. Ustekinumab provided sustained clinical benefit across global and organ-specific SLE-disease activity measures and reduced flares through 48 weeks. The randomised, placebo-controlled, crossover study will continue being further evaluated. This is an interesting to follow!

Thomas Dörner presented novel paradigms in the management of SLE. The recently developed new classification criteria for SLE have been revised to exclude SLE mimickers and to diagnose a truly autoimmune systemic lupus, suitable for early diagnosis.

 

Definitions of remission and low disease activity in SLE (LLDAS) have been proposed and validated against outcomes such as glucocorticoid usage, damage accrual and quality of life. Both targets are associated with improved outcomes, however at present persistence in remission is not common. The achievement of LLDAS is not rare, persistence in LLDAS is achievable.

In 2019, Belimumab (Benlysta) met the endpoint in four trials. It proved to increase quality of life and prevent organ damage. It has also been approved for use in children.

In the GSK Satellite Symposium: From today’s reality, to tomorrow’s “Vision for Lupus” the presenters told about the “Vision for Lupus” project, where a global multidisciplinary Steering Committee comprising a person with lupus, a patient advocacy expert, representation from international lupus patient organisations and clinicians specialising in the condition to discuss the future. The mission of the project was to identify the current gaps and inconsistencies in lupus care, consider what we want lupus care to look like in the future and how to get there. You can read more about the results of the vision for lupus report on the website: https://www.visionforlupus.org

 

There was a huge interest in the Lupus Europe Exercise programme for lupus patients from both patients, physicians and HPRs. They all mentioned, that this programme would be useful for all rheumatic diseases. Professor Marta Mosca saw a small preview of the videos and was very excited! She wants the ERNs not only to endorse the programme but also to distribute it. Exercise as a form of treatment for people with RMDs was an overall topic of this year´s EULAR programme.

Alice Grosjean, who started the Sjögren Europe in March this year presented her group at a PARE session. In her presentation of “Setting up a European federation of Sjögrens Syndrome” she acknowledged Lupus Europe as a big help and inspiration. Here is a link to their website: http://sjogreneurope.org

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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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