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.
Alain Cornet- Posted on
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If you lost the Lupus White Book webinar, held on October 21, you can listen it at the following link https://www.youtube.com/watch?v=xmoe9_gGrrI
💻 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
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
@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
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
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✨
✅ 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
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
✅ 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 👍
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
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.
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!
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
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
There are only a few weeks left to register for CORA 2023 and save up to € 215! Secure your spot today!
#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
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
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
’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
#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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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!
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!
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
Защо не се превеждат статийте за лупус
"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
Moi personnellement pour l'instant c'est galere
Crucial❣️
