Here is our second ‘Trustee story’, this time from Katharine. 

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When I was first diagnosed, I didn’t even know that there was a patient association in my country, let alone a European umbrella organisation working towards common goals on behalf of other European associations.

I haven’t been able to work for a few years due to different auto-immune diagnoses, one of which is lupus, but, now that I am being better followed up and have a better medication regime, I realise I can do a little to help out.

When I learned that LUPUS EUROPE were looking for nominations to be a trustee, I was interested but absolutely terrified of not being able to do the job. Unlike some people within LUPUS EUROPE, I don’t have experience of running a national patient association and I also hadn’t used my work skills for a few years so felt rusty and lacking in confidence.

In the years prior to applying to becoming a trustee, I had been helping out by attending certain important events, representing LUPUS EUROPE at EPF & IAPO. I realised when attending these events that I would do a far better job if I were more closely involved in what was going on within LUPUS EUROPE.

That realisation is what eventually decided me and, with assurance that I wasn’t applying for a specific role – I felt so unsure of what I would be able to do – I decided to take the plunge and put my name down.

It is obviously an important commitment but it is also a very flexible one. Every trustee does what they are able to do and the whole team works together to best harness the skills each person may have.

Our conference calls and face-to-face meetings are busy and animated. We are all very much encouraged to give our opinion. We don’t always agree but work together to find the best way forward. The amazing thing about being involved in any LUPUS EUROPE and patient advocate activity is the ‘energy’ in the room. People may expect a room full of sick people to be a dull place but nothing could be further from the truth. Of course, as a lupus patient, I get tired, but that energy truly makes me feel alive!

I have found this challenge to be very rewarding personally. I am able to bring unused skills back up to date and have discovered more about how I can develop as a person and what I’m really good at. I work with a wonderful and dynamic team and have met many other like-minded people through events I attend on behalf of LUPUS EUROPE.

And the best thing… I’m helping move things forwards for lupus patients across Europe.

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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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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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