LE Info Centre - Lupus Europe

Stay Updated and Knowledgeable About Lupus Europe

Lupus Europe – Info Centre

We want to share some key information and links that we found particularly relevant for people living with lupus in Europe. While we do our utmost to select credible sources of information and quality publications, the articles and links reflect the views of their authors rather than of LUPUS EUROPE.

Latest Lupus Europe News

See our latest Blog articles, initiatives or projects.

LEAF - Lupus Expert system for the Assessment of Fatigue

Go to the LEAF tool for an assessment and personalised recommendations on improving fatigue

Hydroxychloroquine Dosing survey

Our survey on HcQ dosing, retinopathy and adherence is published in Lupus Science and medicine!

Anifrolumab

Anifrolumab has now been approved by the European Medicines Agency (EMA) as an add-on therapy for the treatment of active, moderate to severe SLE

Lupus reference tweets

Prof. L. Arnaud is very active on twitter, often with recent news in 1 slide

EULAR on Vaccination

Read the EULAR View-points on SARS-CoV-2 vaccination in patients with Rheumatic and Musculoskeletal diseases (RMDs)

Want To Make A Poster?

See attached Simon Stones slides explaining how to make a poster for a scientific event!

Covid impact on rare diseases patients

look at the attached infographic made by EURORDIS based on 6945 answers

This is living

Go to the campaign’s autoimmune conditions webpage!

What are ERNs?

Find out about Patient Involvement in the ERNs

Do you know ERN ReCONNET

This is the European Reference Network responsible for lupus

VACOLUP Study

Learn about the Tolerance of COVID19 Vaccines in Lupus Patients

Living with lupus in 2020 - SURVEY PUBLISHED

Thank you to the 5922 respondents

What are ERNs?

Find out about Patient Involvement in the ERNs

Do you know ERN ReCONNET

This is the European Reference Network responsible for lupus

VACOLUP Study

Learn about the Tolerance of COVID19 Vaccines in Lupus Patients

Do you know ERN ReCONNET

This is the European Reference Network responsible for lupus

VACOLUP Study

Learn about the Tolerance of COVID19 Vaccines in Lupus Patients

Lupus Europe STRATEGIES

LUPUS EUROPE • Intro

LUPUS EUROPE • Intro

Feb 21, 2019

LUPUS EUROPE • Research

LUPUS EUROPE • Research

Feb 21, 2019

LUPUS EUROPE • Members

LUPUS EUROPE • Members

Feb 21, 2019

LUPUS EUROPE • Heard

LUPUS EUROPE • Heard

Feb 21, 2019

Live Twitter Feed

Lupus Europe Follow 3,279 2,409

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

; Lupus Europe @LupusEurope ·

8h 1529897407093387268

#Fatigue is present in most #lupus patients and, according to our European patient survey conducted in 2020, is the most bothersome of #lupus symptoms.
One of the targeted interventions in fatigue is exercise
Have you seen our exercise program? 👉

Me & Lupus - Lupus Europe

LUPUS EUROPE is the European umbrella organisation that brings together national lupus patient organisations from across...

buff.ly

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; Laurent ARNAUD @Lupusreference ·

21h 1529697559308025856

✅ May is #lupusawareness month
Let's (re)check 🔎 how #digitalhealth & #bigdata 🖥️ can be used to improve the care 🏨 of #patients with #autoimmune diseases such as #Lupus. There are so many potential applications 😍
Check our paper at: https://doi.org/10.1016/j.autrev.2021.102864

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; Laurent ARNAUD @Lupusreference ·

25 May 1529340226857992193

✅ May is #lupusawareness month
Following yesterday's talk 📺 for @TAYInternists & @AJInternistes (thank you 🙏) let's (re)view the general strategy 🧑‍🎓 to decide the potential attribution 🔎 of #neurological and #psychiatric manifestations 🧠 to #Lupus (#NPSLE)...or not.

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; Lupus Europe @LupusEurope ·

25 May 1529477786691424256

Our Secretary, Annemarie Sluijmers, today talked about "the Patient Experience of Feeling Left Behind" at #WHA75 event organised by @IADPO @IAPOvoice and @ILDSDerm

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; ACR Simple Tasks @ACRSimpleTasks ·

22 May 1528421690933395458

Lupus & lupus nephritis can affect a person's reproductive health, however a safe pregnancy is possible with planning. If you're living with lupus and considering pregnancy, watch this caption-supported video about pregnancy planning from the @ACRheum.

Lupus & Pregnancy - Conversations for Primary Care Providers to have with Patients

This is "Lupus & Pregnancy - Conversations for Primary Care Providers to have with Patients" by ACR Lupus Initiati...

acr.tw

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; Lupus Europe @LupusEurope ·

24 May 1529053349097660419

Thank you for highlighting our study 😃! Coping strategies are key for accepting diagnosis and adapting to the limitations patients may have due to #lupus

Laurent ARNAUD @Lupusreference

✅ May is #lupusawareness month
Let's discover the main strategies used by #Lupus #patients to cope with the disease (in their own words). A very interesting study by @LupusEurope & Mosca, just published in Lupus Sci Med at: https://lupus.bmj.com/content/lupusscimed/9/1/e000656.full.pdf

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; Bethan Goulden @bethangoulden ·

21 May 1528061559100014593

5 years on from EULAR recommendations on prescribing in 🤰: how has expert opinion changed?
- More use of csDMARDs & TNFi
- More hestiancy for NSAIDs & pred
- Preference for fab fragments (cimzia) & fusion proteins (etanercept) over complete monoclonals

Changes to expert opinion in the use of antirheumatic drugs before and during pregnancy five years after EULAR: points to consider

Véronique Laure Ramoni, Céline Häfeli, Nathalie Costedoat-Chalumeau, Christina Chambers, Radboud J E M Dolhain, Marcell...

academic.oup.com

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; Laurent ARNAUD @Lupusreference ·

23 May 1528760815670763521

🆒 I'm feeling very privileged to give a talk about the management of neuropsychiatric #Lupus (#NPSLE) tomorrow evening for the young internists of @TAYInternists & @AJInternistes 👍 Thank you very much for your invitation 🙏 https://twitter.com/TAYInternists/status/1528759341955817472

Tunisian Association of Young Internists @TAYInternists

2nd 📢 Francophonic 🇫🇷 young internists evening is only one day away ⏰

➡️ Let’s talk #Lupus during #LupusAwarenessMonth

@Lupusreference @Dhrif_CTD @HoussemAbida2 @LorisPSA https://twitter.com/tayinternists/status/1519052795277680643

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; Laurent ARNAUD @Lupusreference ·

23 May 1528616274678497281

✅ May is #lupusawareness month
Let's (re)check the main targets 🎯 of autoantibodies in #Lupus:
Anti-Sm target proteins of the common core of U1-2-4-5 small nuclear ribonucleoproteins (snRNP) which combine to form the spliceosome and removes introns from transcribed pre-mRNA 👍

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; Laurent ARNAUD @Lupusreference ·

22 May 1528367651143180288

✅ May is #lupusawareness month
One of the main goals 🎯 of treatment in #SLE is to prevent #DAMAGE 🚧 Damage in #Lupus is irreversible 💔 but the functional consequences may improve 📈 over time 🕑 through physiological adaptation ✅ or treatment 💊
Check:https://doi.org/10.1002/acr.24849

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; Laurent ARNAUD @Lupusreference ·

21 May 1527889803932491776

✅ May is #lupusawareness month
Let's (re)check 🔎 the burden of systemic #Lupus in Europe. Do you agree with these numbers? An amazing study by @LupusEurope
#LupusAwarenessMonth
Check the FULL paper for all details at: http://dx.doi.org/10.1136/lupus-2020-000469

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; Lupus Europe @LupusEurope ·

20 May 1527637944722399237

There are over 100 autoimmune & autoinflammatory diseases as well as conditions that may involve some form of arthritis. Out of all those conditions only a few, including some that are rare, involve early-onset inflammation-driven arthritis as a major clinical component

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; Laurent ARNAUD @Lupusreference ·

20 May 1527521681195024385

✅ May is #lupusawareness month
And it's a great opportunity to remind you ⬇️ of the incredible power of physical activity 🏃 in #lupus 🦋 Key messages:
- PROVEN to improve #fatigue 👌
- Start low/slow 📈
- Don't jump on inflammed joints!
- Use sunscreen 🌞
Our @CRMR_RESO reco ⬇️

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; Laurent ARNAUD @Lupusreference ·

10 May 1524049913994268672

IF you have #Lupus and #Fatigue, you may participate to our #LEAF study (➡️ Link: https://iamfatigued.limequery.org/584745?lang=en) and in 15 min get a personalized assessment + detailed recommendations about how to IMPROVE FATIGUE in your very own situation. Please give us some feedback 🔄 we need it!

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; Lupus Europe @LupusEurope ·

19 May 1527340163227013121

Lack of awareness leads to
- Delayed diagnosis
- Compromised QoL
- ⬆️healthcare costs
Education about AUTOimmune & AUTOinflammatory diseases,including the fact they are full body diseases affecting many parts (joints,tissues,organs) is necessary to improve QoL #AiArthritisDay

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; Lupus Europe @LupusEurope ·

19 May 1527333362494365697

Don’t forget @eularYoungPARE event on coping with a diagnosis, which starts in 1 hour. It might be useful for #lupus patients that have just been diagnosed and their families

EULAR Young PARE @eularYoungPARE

📣 Join us today in #YoungPAREwebinar "Coping with a diagnosis – Accepting your diagnosis can make you stronger"!

📅 19 May 2022, 20:00 - 21:00 CEST

Register / Login to attend 👉 https://bit.ly/3s8poaV

#eularPARE #EULAR #YoungPARE #rheumatology #FightingRMDsTogether #rheuma

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; Laurent ARNAUD @Lupusreference ·

19 May 1527187128496553985

🆒 Today I will give a talk 🔊 about the most promising molecular targets 🎯 and future #treatments 💊 for systemic #Lupus for the French Society of Immunology @sfiimmunologie. Thanks for the invitation! #immunology

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; Lupus Europe @LupusEurope ·

19 May 1527241410163908608

Thanks to all patients around the world for joining the global campaign to #MakeLupusVisible!

WorldLupusFederation · #WorldLupusDay @WorldLupusFed

From sharing their #lupus story or educational facts about this cruel disease, to wearing purple and lighting up landmarks, check out some of the best photos from people across the globe that came together last week to #MakeLupusVisible on #WorldLupusDay. https://youtu.be/IJgNe3dZRcY

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; Laurent ARNAUD @Lupusreference ·

19 May 1527157877105893378

✅ May is #lupusawareness month
Check the contemporary management of #Cutaneous #Lupus erythematosus (CLE) ⬇️
- Acute CLE: typically associated with systemic lupus (#SLE)
- Subacute CLE: drug-induced?, check anti-SSA
- #Discoid CLE: stop smoking, topics, MTX+Thali if severe.

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; Lupus Europe @LupusEurope ·

18 May 1526996039466635269

Many of the treatments used in #lupus are not specifically approved for #SLE. However, they have been proven to be safe and effective. If you wish to learn more about drug repurposing, don't miss out #EULAR2022

EULAR @eular_org

📢 Attend the #EULAR2022 Scientific session:
👨‍⚕️ Drug repurposing in Rheumatology: from bench to bedside
👉 Learning objectives https://bit.ly/3jWYONi

🔔 Accessible on #EULAR2022ondemand until 31 July
⭐ Register now https://congress.eular.org/registration.cfm

@EMEUNET
@eularPAED
@eularHPR

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7 days ago

There are over 100 autoimmune and autoinflammatory diseases as well as conditions that may involve some form of arthritis. Out of all those conditions only a few, including some that are rare, involve early-onset inflammation-driven arthritis as a major clinical component. This type of inflammation-driven arthritis is otherwise known as “autoimmune arthritis" or "autoinflammatory arthritis", depending on the condition it is associated with, or more simply AiArthritis.

Lupus can involve early-onset inflammation-driven arthritis as a major clinical component.
However, as a systemic autoimmune disease lupus affects more than “just” the joints. Inflammation in SLE can affect the whole body.

Approximately 300 million people worldwide have a diagnosis of an AiArthritis disease.

World AUTOimmune AUTOinflammatory Arthritis Day, also known as #AiArthritisDay, aims to raise awareness of autoimmune and autoinflammatory diseases that can cause joint inflammation.

May 20th is #AiArthritisDay. Join us and DRIVE awareness for these conditions that, like #lupus, affect the lives of so many people around the world.

For more information you can visit www.aiarthritis.org or follow International Foundation for Autoimmune & Autoinflammatory Arthritis ... See MoreSee Less

Autoimmune & Autoinflammatory Arthritis disease nonprofit

www.aiarthritis.org

Patients who use professional experiences and global conversations to impact autoimmune & autoinflammatory arthritis disease education, advocacy, and research.

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Може ли лупуса да засегне мозъка и в какво се изразява.Благодаря

RUPUS🦋🦴👍🏻

Thank you LUPUS EUROPE!

2 weeks ago

SLE is a chronic systemic autoimmune disease that can affect many organs, including the skin, lung, kidney, heart, brain and joints, with different grades of severity. There exists a range of coping strategies lupus patients may use to deal with the impact SLE has on their lives.

Alain Cornet, Davide Mazzoni, Angela Edwards, Dario Monzani, Gabriella Pravettoni, Jeanette Andersen and Prof. Marta Mosca analysed data from the "Living with Lupus in 2020" survey and were able to identify the most frequent words used by patients to describe their coping strategies, grouping them into significant themes. Five themes, corresponding to as many coping strategies, were identified and all strategies were quite important for patients.

The study's authors were also able to test the possible association between these themes and some patient characteristics. The results of this study have strong implications for clinical practice and for interventions aimed at improving patients' quality of life.

Read the full research by clicking on the link below:

lupus.bmj.com/content/9/1/e000656 ... See MoreSee Less

Coping with systemic lupus erythematosus in patients’ words

lupus.bmj.com

Objective Previous research on coping strategies of patients with SLE showed that there are no absolute adaptive or maladaptive strategies and that the range of potential coping strategies is large an...

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2 weeks ago

As much as we love hearing from you all and appreciate the time you take to share how you #kicklupus and inspire others, we cannot allow any content specifically about healing products for lupus.

We would greatly appreciate if you followed this rule when posting on the page.
Thank you ... See MoreSee Less

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2 weeks ago

#WorldLupusDay finishes today, but #lupusawareness does not. There is so much more we can do to make life with #lupus better. Watch our vice chair, Anne Charlet, talk about her journey of becoming a Board Member.
You can also join us and become a volunteer ... See MoreSee Less

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Wauvvvv SO good looking :-)