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 […]
Today our board member Amy Somers is at the @EFPIA Patient Think Tank! A forum for an open exchange of ideas, information & perspectives between Patient Organisations & industry on topical issues impacting on patients like health technology assessment #HTA and unmet medical needs
People with #lupus are twice as likely to develop cardiovascular disease as healthy people.
Learn more about CV risk management in RMDs with the @eular_org recommendations by @SavinoSciascia @Lupusdoc @ramos_casals et al. https://ard.bmj.com/content/81/6/768
#WorldHeartDay #WorldHeartDay2022
This is such a great #lupus100 question that many patients have.
Getting to know your #lupus is key to have the answer, although all of us encounter situations in which we are not sure. In case of doubt, remember to always consult your physician and never self-medicate!
@LupusEurope @ern_reconnet I remember asking, if I'm going to feel bad pretty much all the time, how will I ever know that I'm sick/ill with another ailment, vs my symptoms just being Lupus?
Still not sure I have an answer for that and Lupus has lived with me almost 10 years now...🤔
-What to expect from treatment/disease
-What exactly our treatments do
-How to recognize/document symptoms
-What we can do in between visits
This should be an ongoing convo and not just one time, especially when we're overwhelmed from just having been diagnosed. #Lupus100 https://twitter.com/LupusEurope/status/1573024815681884163
Patients can forget asking certain questions,especially the day they are diagnosed,due to the shock of knowing they have lupus. What is the question you should have asked that you didn't?
Physicians:what is the most important question we should ask when being diagnosed? #Lupus100
Chronic conditions like #lupus are a worldwide concern affecting individuals, their loved ones & society at large.
At LUPUS EUROPE we strive to make life with lupus better. That’s why we have partnered with THIS IS LIVING. Do you want to know more? Visit https://buff.ly/3qIU6Gw
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 ...
buff.ly
🎧 Listen to the latest #eularPARE #Podcast! "How to create a programme for #patient education after #diagnosis"
🌍 Learn about a programme called “Know Your Lupus” and how this has helped patients manage their disease
👉https://spoti.fi/38w8qwg
👉https://apple.co/3a7HWll
#EULAR
✅ You can now download 📥
THE #LUPUS WHITE BOOK
by @SLEuroSociety
(obviously for free...)
At the following link: https://d10qmes3r0zm40.cloudfront.net/sleuro/wp-content/uploads/2022/09/27162222/Lupus-White-Book.pdf
✅ Immensely proud to present the first edition of @SLEuroSociety #LUPUS WHITE BOOK.
With an amazing team of experts, we have reviewed the most contemporary challenges in the field of #SLE
You can register to know more at https://sleuro.org/lupus-white-book
https://m.youtube.com/watch?v=vDYTiPZPYeI
What if you fall ill while in another 🇪🇺 Country?
With the European #HealthData Space a local doctor could see your medical history in his own language. But never without your permission.
#EHDS aims to ensure high-quality care to EU citizens at all times.
#HealthUnion
Genetic background in the childhood #SLE #cSLE pathogenesis is important. An interesting study on genetical and phenotypical findings of childhood-onset systemic #lupus erythematosus by Morán Álvarez et al. will also be presented at #lupus2022.
See you all in Copenhagen!
✅ This morning at Objectif-H, the French school for young #rheumatologists, we're talking about the complex world of scientific #publication. From the initial scientific idea to the final publication through #grant searching and successful reviewing the full path is tough!
🆕 article published in @FrontiersIn Medicine
"An overlook on the current #registries for rare and complex connective tissue diseases and the future scenario of #TogethERN ReCONNET"
https://www.frontiersin.org/articles/10.3389/fmed.2022.889997/full
#EuropeanReferenceNetworks
ERN ReCONNET. More than a Network.
Nearly there!!!
What will be the first question you will ask?
#Lupus100
The “Living with lupus in 2020” survey has highlighted the need for change in access for #lupus patients. That is why we chose "Access" as the theme of our 2022 #LupusConvention. You can read the full convention report here https://buff.ly/3SfYCIn
🔔 BIG NEWS: the 13th European Lupus Meeting has been accredited by the
European Accreditation Council for Continuing Medical Education (EACCME) with 17 European CME credits.
See you soon in Stockholm, 5-8 Oct to improve your knowledge! https://bit.ly/3BEBImU
#SLEuro #lupus2022
✅ Question to #nephrology & #rheumatology colleagues taking care of #lupus #nephritis ➡️ what is your INITIAL (oral) glucocorticoid dose for the treatment of #proliferative #LN? (Following m-pred infusions)
New content online! Paediatric glucocorticoid toxicity index: new possibilities in assessment http://dlvr.it/SYpFhv
✅ Interesting summary of our recent paper on #Lupus #Fatigue by the @RheumatologyNet ⬇️
https://doi.org/10.1136/rmdopen-2022-002395 https://twitter.com/RheumatologyNet/status/1572647013061398528
#Fatigue, a highly multifactorial manifestation of #lupus, can be related to disease activity or independent of the disease itself. Investigators determined whether fatigue could be a significant confounder of Physician Global Assessment ratings.
http://ow.ly/qSJR50KPszL
Patients from the Systemic Lupus International Collaborating Clinics cohort were serially assessed with different measures of remission in this cohort study. Showed that remission and low disease activity are associated with less damage accrual over time. https://bit.ly/3TSmxz3
Low levels of ECR1 in early or mid-pregnancy are predictive of an adverse pregnancy outcomes in systemic lupus erythematosus. Therefore, screening for ECR1 and EC4d early in pregnancy may identify patients with increased risk of serious pregnancy complications.
Despite the limitations that the authours acknowledge in this study, the findings will make possible to identify high risk patients and consider a closer management and reinforce the recommended preventive measures.
lupus.bmj.com
Background Complement activation has been associated with adverse pregnancy outcomes (APO) in SLE. Pregnant women with SLE were studied to evaluate whether complement dysregulation within the first tw...
Patients can forget asking certain questions, especially the day they are diagnosed, due to the shock of knowing they have #lupus.
What is the question you should have asked and you didn't?
What is the question you think physicians should answer without being asked?
#Lupus100. With the collaboration of ERN RECONNET, Katana Santé and Fai2r.
Qu'es le lupus ? Moi j'ai eu a " c'est un lupus...comme votre grand mère" point final Je me suis imaginer ,mes mains se déformer,me paralyser j'ai eu peur maintenant 7 ans plus tard bien-sûr chez changer d'internet me suis tourné vers un rhumatologue et centre des douleurs un nouveau immunosuppresseurs mais pas d'explication sur les effets secondaires a part pour le foie ... suspens es ce que mon corps va accepte ce médicament
Recording your appointment helps
Medication side effects short and long twem
More good news for the #lupus commnunity!!
Voclosporin has been approved in Europe for the treatment of adults with active lupus nephritis in combination with a background immunosuppressive therapy regimen.
ir.auriniapharma.com/press-releases/detail/263/aurinia-announces-european-commission-approval-of
Date is set! And #Lupus100 is fast approaching.
If you haven't done yet, subscribe to our newsletter to get the latest updates!
www.lupus-europe.org/me-lupus/lupus-europe-info-centre/
;
