Month: May 2015

About being a trustee – Katharine’s story

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

Read More

Meet the Lupus World at the ICL in Vienna

Today is World Lupus Day, a great time to be thinking about bringing the Lupus World together.  ‘Meet the Lupus World’ is our theme for the Lupus Summit in Vienna on 5th September 2015. The summit will take place as an integral part of our annual convention. Make sure your group is represented by getting in touch with […]

Read More

Live Facebook Feed

Comments Box SVG iconsUsed for the like, share, comment, and reaction icons
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!

bit.ly/inspire_patients_short ... See MoreSee Less

Play
View on Facebook
· Share
Share on Facebook Share on Twitter Share on Linked In Share by Email
View Comments
  • Likes: 2
  • Shares: 2
  • Comments: 2

Comment on Facebook

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
View on Facebook
· Share
Share on Facebook Share on Twitter Share on Linked In Share by Email
View Comments
  • Likes: 8
  • Shares: 3
  • Comments: 0

Comment on Facebook

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!

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
View on Facebook
· Share
Share on Facebook Share on Twitter Share on Linked In Share by Email
View Comments
  • Likes: 13
  • Shares: 5
  • Comments: 0

Comment on Facebook

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!!! 😃🙌

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!!! 😃🙌 https://www.youtube.com/watch?v=7jc7SiP5BsA
View on Facebook
· Share
Share on Facebook Share on Twitter Share on Linked In Share by Email
View Comments
  • Likes: 12
  • Shares: 1
  • Comments: 1

Comment on Facebook

Thkx