In 1989, LUPUS EUROPE (then named ELEF)’s first convention took place in the historical city of Leuven. 29 years later, LUPUS EUROPE’s 2018 annual convention brought us back to the place of our beginnings. The 2018 convention theme was “Restoring Hope”. Lupus is not always easy to deal with and we can often feel down: when a flare is painfully reminding us of the disease; when one more clinical trial fails; when we feel tired and misunderstood… As leaders in patient groups, we also regularly receive calls for help from people who are so scared after just being diagnosed, or who face depression. It is so easy to lose hope when you have lupus…. Yet there are reasons to keep hope: the search for new medication is more active than ever; patients are becoming more involved handling their own disease; lupus awareness is growing; legislation in support of people with disabilities (visible or not) is progressing; and patient support groups are bringing hope to their members in many different ways.

A total of 37 member delegates, coming from Belgium (5), Cyprus (2), Denmark (3), Finland (2), France (3), Italy (4), Lithuania (2), Netherland (3), Portugal (2), Slovakia (1), Sweden (1), UK (7), Switzerland (1), and Israel (1) joined the convention this year, making it a record number of participants.

Our program gave a very large place to interactions between participants, with 15 different workshops on various topics centered on the “restoring hope” theme. Participants defined and selected themselves the themes that they had most interest for, including how patients can better participate to research, making the web more positive, Giving inspiring life stories, or enjoying the small things in life.

We obviously reviewed the activities of lupus Europe in 2018, and in our council session, renewed the board and set the direction for 2019. Several external speakers gave us additional insights on the theme of “restoring hope” : Professor Houssiau, chair of the European Lupus Society addressed the recent medical developments, and the reasons to hope they provide;  Bernadette Van Leeuw, Chair of Lupus Belgium (French speaking group) highlighted the importance of action to make better things indeed happen as a key component of hope; Torben Wiese, inspirational speaker, invited us to all become change agents; and Nele Cayers (Chair of PARE) explained how we can achieve better results by leveraging the broader EULAR community. The convention closed with an excellent seminar from Sylvia Gauman (Swiss delegate)on improving our communication with Journalists…

A detailed convention report can be downloaded here: Leuven 2018. You can also find here convention reports from prior years: Milan 2017Wurzburg 2016 and Vienna 2015

 

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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