Alain CornetHello again – now a note about day 2 at the IAPO GPC 2016! (International Alliance of Patients Organisations) Global Patients Conference 2016) Sunday morning was devoted to UHC (Universal Health Coverage). We had two presenters, from the WHO (World Health Organisation), Nittita Prasopa-Plaizier and Mario Ottigilo. UHC is a global project with the goals : health […]
Alain CornetThis week the training begins… dedicated to Denmark – click on Run with Andreas for more.
Alain CornetWe have a new page on the LUPUS EUROPE blog, in honour of an inspiring young man who has decided to run with and for LUPUS EUROPE. To follow his story each week simply click on the tab ‘Run with Andreas’. Week 0/24 Greatest life Challenge, till the next one! A few months ago […]
Alain CornetLUPUS EUROPE’s annual convention will be held in Würzburg, Germany this year from 28th September (afternoon welcome and registration) – 02 October 2016 (closing after morning sessions). The German Lupus Association is celebrating their 30th anniversary this year and is looking forward to welcoming us to Germany for the occasion. More information coming soon…
Alain CornetHI! from the IAPO (International Alliance of Patients Organisations) Global Patients Conference 2016! I’m representing Lupus Europe at this amazing conference! From www.iapo.org.uk “150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world.” My objective here was to represent Lupus Europe […]
Alain CornetPatients take universal health coverage into their own hands 150 patients’ advocates from 48 countries are meeting in London to discuss how innovation can help achieve universal, patient-centred and sustainable access to healthcare around the world. Patients’ groups, academics and health organisations will meet at the 7th Global Patients Congress, from 9-11 April, to share innovative […]
Alain CornetIn one month’s time it’s World Lupus Day. For the occasion the World Lupus Federation (which reunites the Lupus Foundation of America, LUPUS Europe and other Lupus federations around the world) has set up a petition, addressed to the World Health Organisation, requesting that Lupus become a priority, enabling patients to be diagnosed and treated as quickly […]
🗣️ 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
