“Living with lupus in 2020” survey – answer now before it closes May 31

On May 10, Lupus Europe launched its “living with lupus in 2020” survey. In only 10 minutes, participants provide a maximum of input to help us understand multiple impacts of living with lupus today : Family and couple life, studies, work, symptoms and treatments, Quality of life, access to health care,…

The survey is available in 20 languages, making it easy for all people living with lupus to take part. We have already collected more than 4,000 answers, but some geographies remain under-represented, and everyone’s voice counts.

GIVE 10 MINUTES OF YOUR TIME to help lupus research by answering the survey and relaying the survey link through social media, asking for more people to take part, not later than MAY 31.

Select your language and take the survey here: https://www.surveylegend.com/s/287a

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Lupus Europe is the umbrella association of currently 29 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.

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; Sonia Bourguiba-H. @SoniaBourguiba1 ·

29 Mar 1641058655066791936

📣 #meetthespeakers! We are delighted to have Prof. Marta Alarcón-Riqueleme from @genyo_pts as a speaker @ConferenceEfi, #plenary session IV "#ai & big data transforming medical research"
Don't miss her talk👇
@3TR_IMI @twit_PAG @soumya_boston @yluo86 @jillahjillah @So_Limou https://twitter.com/ConferenceEfi/status/1640685435599896577

EFI_Conference #EFI2023 @ConferenceEfi

📢 #EFI2023 PLENARY SPEAKER ANNOUNCEMENT!
Meet Prof. Marta Alarcón-Riquelme 👏
She will speak about: "Using transcriptome data to stratify and predict treatment responses in lupus and other systemic autoimmune diseases"
Reserve your spot 👉 https://lnkd.in/eFWEtXq7

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; Laurent ARNAUD @Lupusreference ·

16h 1641768922176159744

✅ In #PANLAR2023, I will give a talk about "10 pearls in #Lupus". My pearl #1 ⬇️ is that there is an ongoing debate about the optimal daily dose of #hydroxychloroquine in #SLE. My point of view is that it's a trade-off between efficacy and eye 👁️ toxicity.
➡️ What do you think?

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; Lupus Europe @LupusEurope ·

17h 1641748423085903873

Proud to see some of our PAN members in the @eupatients Patient Expert Training Programme!

Best of luck to all the trainees!

EUPATI @eupatients

Exciting day as our 105 trainees attend the Patient Expert Training Programme online event😍
Over 4 days our #Cohort6 will get to know each other & continue to study together 🤓
Fantastic start this morning & best of luck with your studies 🙏
#IAmEUPATIFellow #OpenClassroom

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; Lupus Europe @LupusEurope ·

17h 1641748421152317441

More answers needed from patients!

Please share so that it can reach more people 🙏 .

Thank you!

Lupus Europe @LupusEurope

@chriswincup @Cambridge_Uni 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!
https://bit.ly/inspire_patients_short

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LUPUS EUROPE

1 week ago

🚨 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

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

$Discoid lupus erythematosus (DLE) is the most common form of chronic cutaneous lupus erythematosus. It is characterised by persistent scaly plaques on the scalp, face, and ears, which can progress to scarring, atrophy, depigmentation, and permanent hair loss in affected hair-bearing areas (Source: DermNet). This study, published by Prof Marca Mosca et al., describes 2 cases of severe and refractory DLE successfully treated with anifrolumab, a human monoclonal antibody. Although anifrolumab has been recently approved for the treatment of SLE, data from randomized clinical trials have shown a significant difference in cutaneous response rate in patients treated with anifrolumab from those in the placebo group. While the effectiveness of this treatment in real life and in different types of skin lesions has yet to be determined, it could represent a new valid opportunity for treating DLE. https://jamanetwork.com/journals/jamadermatology/article-abstract/2798967$

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LUPUS EUROPE

1 week ago

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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LUPUS EUROPE

1 week ago

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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