Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Ram Blass from Inbar who talked to us about the wonderful work the […]
Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Marga Schut and Wendy Zacouris from NVLE who talked to us about the […]
Katharine WheelerThe LUPUS EUROPE 2018 convention is underway in Leuven, Belgium and among the serious speeches on medical and psychological topics, we were delighted to be presented the beautiful (and very creative) word cloud entries in the Kick Lupus competition. All in all there were 35 entries to the competition, a great response! The judges on […]
Alain CornetLUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire […]
Alain CornetWe at LUPUS EUROPE wish you all a great World Lupus Day, full of hope and awareness! For this we have created a little animated video about LUPUS EUROPE. Please feel free to share! [wpvideo ILoguQxs] We would also like to repost a video made a couple of years ago about the importance of World […]
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 CornetToday is World Lupus Day, a great time to be thinking about bringing the Lupus World together. ‘Meet the Lupus World’ is our theme for the Lupus Summit in Vienna on 5th September 2015. The summit will take place as an integral part of our annual convention. Make sure your group is represented by getting in touch with […]
Alain CornetIf you are a member of one of LUPUS EUROPE’s member organisations and are interested in getting more involved as a patient advocate – spreading awareness, attending events, working on specific projects… we would love to hear from you. Even if you can only offer a little of your time, your contribution could make a […]
🗣️ Register for our next #EUPATI #Essentials training today🙌
✔️ Content builds on #Fundamentals training
✔️ Professionals experienced in #patientengagment
✔️ Establishing successful relationships with #patients
More 👉 http://bit.ly/3VnJiLG
#Training #Professionals #Register
🧵 Short summary thread on our recent publication looking at the impact of Anti-Rituximab Antibodies in #SLE with our recent manuscript published in @RheumJnl
This has been a story that we have been looking at for a few years now
💻 Link -
Anti-rituximab antibodies demonstrate neutralising capacity, associate with lower circulating drug levels and earlier relapse in lupus
AbstractObjectives. High rates of anti-drug antibodies (ADA) to rituximab have been demonstrated in patients undergoing ...
academic.oup.com
✅ Very happy to report that we have started a multilateral discussion to harmonize the way antinuclear antibodies (ANA) testing results are communicated to physicians and patients. This is absolutely crucial to decrease diagnosis delays for #autoimmune diseases such as #lupus 👍
We are what we eat .. and this is also true for our immune system including #Treg cells in #SLE. See our paper with @GeorgeTsokos out now in @ScienceAdvances 🔓 https://tinyurl.com/ymvam4x3 see thread
The Portuguese Lupus Association was born in 1992. Since then, they have provided #SLE patients with all kinds of support (even financial). Did you know they even have a house where patients can stay when they have appointments in Lisbon? Get to know more! https://buff.ly/3Voj6Ak
Excellent read in @NatRevRheumatol about #HydroxyChloroquine in #lupus. Current guidelines recommend HCQ at 5 mg/kg per day or lower to minimize toxicity. New evidence raises concerns about the risk of #SLE flare associated with such doses. #rheumatology
Hydroxychloroquine dose: balancing toxicity and SLE flare risk
Nature Reviews Rheumatology - Contemporary guidelines for the management of systemic lupus erythematosus (SLE) recommend ...
www.nature.com
📢 Only 3 days left until the Research Webinar on EULAR ASBTRACT 2023, tips from the Scientific Programme Chair with Prof. Marta Mosca, Professor of Rheumatology (IT)
📆 Monday, 5 December 2022, 17:00 - 18:00 CET
Click here to learn more and register 👉https://pulse.ly/ee2eyhe3rb
Studying the characteristics of pregnant women with #SLE is key to implement the necessary tools to ⬇️ the risks in this population. @gerardespinosa5 et al. from @BCNatalResearch & @MAS_Clinic have conducted a study in pregnant women with SLE, #APS or Non-Criteria Obstetric APS
Take a look at our latest collaborative work between @BCNatalResearch and @MAS_Clinic 👇👇👇👇
https://doi.org/10.3390/jcm11226822
🔴 #CàtedraUB_GSK_EAS
Are you ready?
GRAHAM HUGHES AUTOIMMUNITY ORATION-22
Prof. Y. Shoenfeld @oldtautwit
The Mosaic of Autoimmunity
📅 viernes 02.12.2022
⏰12:00-13:00 GMT+01
Aula Magna @CampusClinicUB
ℹ️ http://ow.ly/w96x50LRfua
Registration free➡️ http://ow.ly/36iZ50LRfu9
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 have #lupus?
Are you 18-30 years old and a volunteer of your national lupus group or interested in volunteering? In that case, get in contact with us and join us for exciting opportunities to exchange ideas and have some fun!
Send an email to zoe@lupus-europe.com and we will tell you more …
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
