Alain CornetThe non-profit organisation ClAIR which groups lupus, arthritis and scleroderma associations (among them our French-speaking Belgian member) is organising a virtual congress from tomorrow, 30th March 2018, to 13th April included. LUPUS EUROPE will have a virtual stand in the congress. For more information, please see the press release: virtual congress CLAIR The congress is […]
Alain Cornet690 people participated in the European Lupus Meeting in Düsseldorf last week (March 21-24). This was 50% increase in comparison to the last ELM in Venice in 2016, which indicates a rising interest in this disease. Most of the participants were lupologists from all across Europe and there were even some from Australia, North- and […]
Alain CornetWe still have 3-5 available positions at our Lupus Europe youth panel in May. If you meet the criteria below and fit the geographical spread you could come into consideration. Are you interested in improving conditions for young people with lupus in Europe? Do you have something to say and want to be heard? Are […]
Alain CornetOn December 6th Katharine Wheeler participated in the closing conference for EPF’s campaign on Access to Healthcare for All. At the conference EPF presented their Roadmap for Universal Health Coverage for all. Katharine was invited to speak as a patient organisation representative and stressed the importance of leaving no-one behind if we want to achieve […]
Alain CornetThe LUPUS EUROPE annual convention has just come to a close. Hosted in Milan by Lupus Italy on the occasion of their 30thanniversary, the convention was an inspiring event centred around the theme of “pain, fatigue and stress”, with Dr Chiara Tani as a key note speaker. Benefitting from the Italian Lupus Clinic experience, we […]
Alain CornetJoin your peers as they pave the developmental exchange of research and best practice in rheumatology! Submit your abstract to #EULAR2018: http://congress2018.eular.org/abstract_submission.cfm
Alain CornetIt’s #WorldArthritisDay! Check out EULAR´s #DontDelay #ConnectTodaycampaign video featuring Kate, Aran and Simon. Together, we can raise awareness about the importance of early diagnosis and treatment of rheumatic and musculoskeletal diseases. #WAD #WAD2017 You can watch the video here: http://bit.ly/2yHnbZU
Alain CornetTuesday, October 3rd Chair Kirsten Lerstrøm, LUPUS EUROPE, has been invited to address the TOPRA Annual Human Medicines Symposium; Collaboration – Strategies – Solutions – Global regulatory approaches to improve healthcare. She has been invited to present on How to reflect the needs of patients in drug development programmes in the session “Involving patients in […]
Alain CornetMonday, September 25th Chair Kirsten Lerstrøm, LUPUS EUROPE, has been invited to address the European Parliament ENVI Committee on “The case of lupus: Prevention and Treatment of Autoimmune Diseases” at the workshop in Parliament on “Autoimmune Diseases – modern diseases”. _______________ Message is that lupus is complex and complicated both to manage and to live […]
Alain CornetMay 10th is World Lupus Day What is lupus? Lupus is a chronic autoimmune disease that causes the immune system to attack the body’s connective tissue and organs. Parts of the body affected can include the joints, kidneys, heart, lungs, brain, blood and skin. Up to 500,000 people in Europe have lupus. 90% of people […]
💻 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
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
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❣️
