Convention call

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The summer is a quieter time in terms of events to attend for LUPUS EUROPE but it is not quiet in terms of ongoing projects (including starting to build the next strategic plan for 2018-2023) and getting ready for the convention later in the year.

As you know, this year’s convention will be held from 15th-19th November in Milan, Italy. We’re looking forward to reconnecting with all our old friends and new representatives. If you haven’t already done so, it is time to sign up to attend the convention. The discount for registration ends 15th of July.

We are also looking for further trustee nominations. If you would be interested in getting more involved in LUPUS EUROPE, please don’t hesitate to get in touch with the secretariat or anyone on the board. You can read more about being a trustee in these blog posts: Katharine and Kirsi.

We’re really looking forward to seeing you in Milan for an exciting programme with lots of warmth, information and motivation.

 

 

 

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Alain Cornet

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    LUPUS EUROPE
    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!

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

    The survey was demolished.

    LUPUS EUROPE
    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     ... See MoreSee Less

    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
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    LUPUS EUROPE
    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!

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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
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    LUPUS EUROPE
    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!!! 😃🙌

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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
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    • Likes: 12
    • Shares: 1
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    Thkx

    LUPUS EUROPE Uniting people with Lupus throughout Europe
    Send