Did you know? Lupus is a Rare Disease!

Lupus is rare, but not for us! Come and join us working on our vision:

A fulfilling life

for all people with Lupus in Europe

until we have reached a world without Lupus

What is a rare disease?  It changes from country to country, but in Europe it means that the disease affects less than 1 in 2000 people.  However, Lupus is also an umbrella word that covers many different types of the disease, as Lupus can affect the joints, skin, kidneys, blood cells, brain, heart and lungs. Each one of these expressions of the disease are rare and very specific, with different treatments.  Lupus is an autoimmune disease, mainly affecting women all around the globe.

To learn more about Lupus and how to help โ€“ link to www.lupus-europe.org

to learn more about “Rare Disease Day” – link to https://www.rarediseaseday.org/

To learn more about Lupus as a rare disease โ€“ link to https://www.orpha.net/ and search for SLE or ORPHA:536.

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1 week ago
LUPUS EUROPE

๐Ÿšจ Call for patients๐Ÿšจ

๐Ÿ”Š 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.

๐ŸŸฃ Please share as much as possible ๐ŸŸฃ 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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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
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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!!! ๐Ÿ˜ƒ๐Ÿ™Œ

www.youtube.com/watch?v=7jc7SiP5BsA
... See MoreSee Less

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!!! ๐Ÿ˜ƒ๐Ÿ™Œ

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