Month: March 2015

EPF working group on access

Tomorrow, 30th March, Katharine will be taking part in the second meeting of the EPF working group on Access to Healthcare. More details here.

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World Lupus Day 2015

Dear Lupus Europe members, The theme for this year’s World Lupus Day is “Tame your wolf – Tame your lupus”. We were delighted to be able to ask Leslie Quagraine, a fellow lupus sufferer, if he could produce the artwork for our campaign. Leslie was born in London but is a long-time resident in Finland. […]

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The Lupus Tamer

Work on the Lupus Tamer book is nearly complete for French and English. We will announce when it is available in e-book format.

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LUPUS EUROPE Patient Panel on Treatment – A great success

Following on from the workshop held during the Helsinki convention, LUPUS EUROPE organised a Patient panel, bringing together 10 people living with lupus, from 7 countries, to share their experience about “treatment”, with a view to help improving the quality of life of people living with lupus. The Panel was conducted through a series of interactive presentations, […]

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Activities February and March

Kirsten attended the Lupus Academy meeting in Rome from 27-28th February – 1st March The trustees will be meeting from 20th – 22nd March – Items on the agenda include organisation for our 2015 Convention to be held in Vienna following directly on from the ICL congress – more information on the convention coming soon!

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Welcome to the Lupus Europe blog

We have created this blog to keep you up to date with the latest news and happenings in Lupus Euorpe. We hope you enjoy reading it.

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Live Twitter Feed

Lupus Europe Follow 4,177 2,829

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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; EMEUNET @EMEUNET ·

29 Nov 1597470673982603264

💻 We want to explore the current landscape of social media by #rheumatology professionals:

How can we support global scientific exchange? Reduce disparity in educational opportunities online?

Take the survey now 👉 https://pulse.ly/fqmlxt7d95

#eularEMEUNET #EULAR #rheumatologist

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; Lupus Europe @LupusEurope ·

12h 1598364057580568582

Lupus patients are at high risk of infections due to #SLE & its treatments. In this great review, @DrMiniDey @ElenaNikiUK et al. compare infection frequency, site & type across immune-modulatory drugs. Great work and visual that will aid when prescribing! https://buff.ly/3VoiAST

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; The Lancet Rheumatology @TheLancetRheum ·

29 Nov 1597533234681856001

@MuhammadShipa @MikeEhrenstein @VersusArthritis @LUPUSUK Molecular signature-based decision making in the era of targeted therapies for systemic #lupus erythematosus

Linked Comment by @IoannisParodis https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(22)00358-7/fulltext

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; The Lancet Rheumatology @TheLancetRheum ·

29 Nov 1597531752955875329

NEW RESEARCH—In an exploratory analysis of the BEAT-LUPUS RCT @MuhammadShipa and colleagues examine biomarkers for response to B-cell-targeted therapies in systemic lupus erythematosus https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(22)00332-0/fulltext @MikeEhrenstein @VersusArthritis @LUPUSUK #OpenAccess

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; RDI @rarediseasesint ·

28 Nov 1597270582730506243

On #UHCDay📅Monday 12 December, join us to make #UHC for rare diseases a reality for the over 300 million PLWRD worldwide.
👉Register:https://bit.ly/UHCRARE

"UHC for rare diseases: Developing Key pillars together" with @UNHumanRights @CSOs4UHC @UHC2030 @FEDER_ONG @irdirc✨

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; Laurent ARNAUD @Lupusreference ·

30 Nov 1597841215055360003

✅ Oh that's cool, we've just been granted a special link for free and direct access to our @JAADjournals paper about the #history of systemic #lupus for the next 50 days 👍 The paper is not new but now is freely downloadable by everyone 😎
https://authors.elsevier.com/a/1gAGehQtRJfKE

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; EMEUNET @EMEUNET ·

29 Nov 1597516175608582145

Find out the latest #EMEUNETwhatisnew about #SLE or #ConnectiveTissueDiseases clinical research by @cristianasieiroat on our website

Read more 👉 https://emeunet.eular.org/sle_ctd.cfm

Do you have any cases of exposure to belimumab during pregnancy?

#EULAR #eularEMEUNET #rheumatology

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; Laurent ARNAUD @Lupusreference ·

29 Nov 1597523514508312576

✅ SAVE THE DATE for a #WEBINAR about #Lupus and #FATIGUE that we will organize for @ern_reconnet with @LouKawka on the 18th of January 2023 at 17:00 (CET) [which is 11:00 EST]. WE WILL PRESENT THE RESULTS OF THE #LEAF study about fatigue in #SLE 👍

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; Lupus Europe @LupusEurope ·

29 Nov 1597618638030344196

Anti-drug antibodies (ADA) can be produced after administration of biological therapies.
ADA to RTX are common in SLE patients & demonstrate neutralising capacity & associate with ⬇️circulating drug levels & earlier relapse.
Study by @chriswincup et al. https://buff.ly/3FcMwfm

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; ERN ReCONNET 🇪🇺 @ern_reconnet ·

28 Nov 1597213513252241411

We're very lucky that we will be co-organising with @eurordis this pilot "Team building training" with the partecipation of #ERN #ePAGs and WG chairs testing the training.

This will be a great opportunity to reinforce existing collaborations and improve how we work together.

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; Lupus Europe @LupusEurope ·

28 Nov 1597297528566796288

Do you know someone with lupus between 18-30 years old? Encourage him/her to get in touch with us! We might have exciting opportunities for those who are member of a lupus group in Europe!
Send an email to zoe@lupus-europe.org and don't miss this unique chance!

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; Lupus Europe @LupusEurope ·

28 Nov 1597271356508233728

As a patient, what are your preferred methods for getting health related information? Do you trust the information shared across social media? Read the results of the last published study by Francesca S Cardwell et al. in which we have taken part! https://buff.ly/3XGiebO

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; RDI @rarediseasesint ·

24 Nov 1595797765879209985

Children living with rare diseases overcome challenges throughout their #education. Help change this❗️Join RDI & @IBE_UNESCO for a discussion on #inclusive education.
🗓28 Nov, 14.00 (UCT+1)
👉Register: https://bit.ly/3GlP0cb
@eurordis @FlaminiaRdi @RareDiseases @GlobalGenes

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; Autoimmunity Network @autoimmunitymd ·

25 Nov 1596146404744896514

There are only a few weeks left to register for CORA 2023 and save up to € 215! Secure your spot today!

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; EAAD @EAAD_EU ·

24 Nov 1595811983433007107

#Antibiotics myth-busting time!
“I am in good health and rarely sick, I cannot become resistant to antibiotics”.

THIS IS (DOUBLE) FALSE!

Why? Watch our video and learn more!

Let's prevent #AntimicrobialResistance together!
#AMR #WAAW #WAAW2022 #EAAD
http://bit.ly/EAAD2022

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; Lupus Europe @LupusEurope ·

25 Nov 1596180163443703808

Proliferative lupus nephritis progresses to end-stage kidney disease in roughly 10% of the cases despite treatment. Persistent isolated C3 hypocomplementemia could be a strong predictor of end-stage kidney disease, according to this study in @KIReports

Persistent Isolated C3 Hypocomplementemia as a Strong Predictor of End-Stage Kidney Disease in Lupus Nephritis

Proliferative lupus nephritis (LN) progresses to end-stage kidney disease (ESKD) in roughly 10% of the cases despite treatment. Other than achieving

buff.ly

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; Lupus Europe @LupusEurope ·

25 Nov 1596102652017770496

Have we learnt how to better use glucocorticoids? If you are taking more that 5mg/day of corticoids, watch this video in which Dr. Ruiz-Irastorza, @equipo_eas, explains how this drug should be used. Stay tuned for more #LUPUS2022 sessions summary series!

70 Years Learning to Use Glucocorticoids

Watch a brief summary on 70 years of learning to use glucocorticoids by Professor Ruiz-Irastorza

buff.ly

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; Loreto Carmona 🖖 @carmona_loreto ·

24 Nov 1595696502881615873

’Towards a global strategy to improve musculoskeletal health’ report now available in 7 languages | Healthy Workplaces LIGHTEN THE LOAD 2020-22 https://tinyurl.com/2luzz7pn

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; Lupus Europe @LupusEurope ·

15 Jan 2021 1350105471508766720

#exercise is key for physical & #mentalhealth. In collaboration with PTs, we have developed an exercise program in 5 levels for people with #SLE ! This has been endorsed by leading EU lupologists & is now also recommended by
@eular_org Do take a look:

Me & Lupus - Lupus Europe

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

www.lupus-europe.org

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; Seminars in Arthritis and Rheumatism @seminarthrheum ·

21 Nov 1594763323630755841

Article in press:

Are there benefit to regular physical activity in patients with #lupus?

Aerobic and resistance training programs had clear benefit and were well tolerated in stable disease in this systematic review.
@Lupusreference

https://www.sciencedirect.com/science/article/abs/pii/S0049017222001792

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Live Facebook Feed

2 weeks ago

In Lupus Europe, we work hard to fulfil our mission. A very important part of that work is to not only be successful in the projects we undertake, but to have high standards and to work collaboratively with #lupus patients, our member organisations and also with lupologists!

This morning we had a medical roundtable meeting, where we had the opportunity to discuss our Strategic Plan for 2023-2028 with a team of incredible lupologists: Professors Arnaud, Houssiau, Limper, Mosca and Schneider gave us incredibly useful feedback today and we had a very productive meeting with them! ... See MoreSee Less

In Lupus Europe, we work hard to fulfil our mission. A very important part of that work is to not only be successful in the projects we undertake, but to have high standards and to work collaboratively with #lupus patients, our member organisations and also with lupologists!

This morning we had a medical roundtable meeting, where we had the opportunity to discuss our Strategic Plan for 2023-2028 with a team of incredible lupologists: Professors Arnaud, Houssiau, Limper, Mosca and Schneider gave us incredibly useful feedback today and we had a very productive meeting with them!

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3 weeks ago

We are delighted to announce the start of our annual #KickLupus competition! Send your submission in the format of your choice (drawing/video/writing) & tell us:
How has volunteering for a #lupus organisation helped change your life?
Amazing prize to be announced soon! ... See MoreSee Less

We are delighted to announce the start of our annual #KickLupus competition! Send your submission in the format of your choice (drawing/video/writing) & tell us:
How has volunteering for a #lupus organisation helped change your life?
Amazing prize to be announced soon!

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3 weeks ago

LUPUS EUROPE • Newsletter • November 2022

Have you read our latest newsletter?
Read all about it by going to
mailchi.mp/lupus-europe.org/lupus-europe-newsletter-november2022 ... See MoreSee Less

LUPUS EUROPE • Newsletter • November 2022

Have you read our latest newsletter?
Read all about it by going to
https://mailchi.mp/lupus-europe.org/lupus-europe-newsletter-november2022

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Защо не се превеждат статийте за лупус

3 weeks ago

"Effective doctor-patient communication is crucial in building a successful therapeutic doctor-patient relationship". This will bring benefits for both doctors & patients and will have an impact on the clinical outcomes.

Learn more about patient-doctor relationship from Prof. Chiara Tani by watching this video and tell us:
How is your relationship with your doctor?
Do you think it helps with adherence and other aspects of your disease?

youtu.be/JUhIx2fjJ_c ... See MoreSee Less

Effective doctor-patient communication is crucial in building a successful therapeutic doctor-patient relationship. This will bring benefits for both doctors & patients and will have an impact on the clinical outcomes.

Learn more about patient-doctor relationship from Prof. Chiara Tani by watching this video and tell us:
How is your relationship with your doctor?
Do you think it helps with adherence and other aspects of your disease?

https://youtu.be/JUhIx2fjJ_c

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Moi personnellement pour l'instant c'est galere

Crucial❣️