Alain CornetHelp us understand the multiple facets of life with lupus today…
Alain CornetSince Hydroxychloroquine (HcQ) has been regularly mentioned in media as a potential medication in the fight against COVID, the number of patients highlighting unavailability issues increased substantially. With the help of its members, LUPUS EUROPE initiated a survey amongst patients to obtain broad based feedback on the magnitude and impact of the issue. Results covering […]
Alain CornetOver the past weeks, LUPUS EUROPE and several of its members have worked to improve availability of Hydroxychloroquine for people with lupus in Europe, as speculations on its possible use for COVID treatment have resulted in an increased (off-label) demand. Our objective is that all patients with a chronic condition requiring Hydroxychloroquine have access, if […]
Alain CornetLUPUS EUROPE and the ERN ReCONNET Patient representatives have launched a short survey to better understand how we can improve quality of life for people living with a rheumatic condition through better patient education. If you are a patient living with a Rheumatic condition or any other Chronic or rare disease, simply follow this link […]
Alain CornetDid you know? Lupus is a Rare Disease! Lupus is rare, but not for us! Come and join us working on our vision: A fulfilling life for all people with Lupus in Europe until we have reached a world without Lupus What is a rare disease? It changes from country to country, but in Europe […]
Alain CornetWe are very proud to announce that LUPUS EUROPE has been recognized by the EMA (European Medicine Agency) as “eligible entity”, the select network of patient organizations that work with the EMA to ensure that the needs and concerns of a wide range of patients are represented via direct contact with the Agency. This status […]
Alain CornetWe would very much like to share some news with you! If you are a Lupus Europe member or potential member, volunteer or potential volunteer, or simply a member of the patient community interested in the activities of LUPUS EUROPE, join us on February 17, 2020 at 20:00 Paris time. On the agenda:– Introduction of […]
As part of its cooperation with the ERN ReCONNET, Lupus Europe is launching an important survey, which we would like to ask you to disseminate as largely as you can to people actually living with lupus. We have made the effort of providing 13 different languages, and are open to adding new ones, so we hope […]
Alain Cornet30 Years ago, on May 26, 2019, LUPUS EUROPE’s Constitution (then under the name of ELEF) was signed… The European Lupus Federation was born. as we celebrate this anniversary, we asked current and past Chairs to reflect on those years in support of People living with lupus in Europe. Yvonne Norton, Chair from 2002 […]
Alain CornetThe 22nd EULAR Annual European Conference of PARE took place in the stunning, historical city of Prague in the Czech Republic 5-7 April 2019 with over 120 delegates. PARE ‘People with Arthritis and Rheumatism in Europe’ forms an integral role at EULAR ‘The European League Against Rheumatism’. The presentations and workshops at the PARE Conference […]
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
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❣️
