The European Patients’ Forum launched their Patient Empowerment Campaign earlier this year. Here is the video accompanying the campaign and showing what patient empowerment might mean for different people.
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Lupus Europe is the umbrella association of currently 29 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.
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 ...
🎧 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
✅ You can now download 📥
THE #LUPUS WHITE BOOK
(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
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.
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"
ERN ReCONNET. More than a Network.
What will be the first question you will ask?
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
✅ 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 ⬇️
#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.
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
3. A field day
ERN ReCONNET Systemic #Lupus Erythematosus Group Kick-off meeting with the Disease Coordinator @MaartenLimper and ePAGs Jeanette Andersen & Alain Cornet.
Seventh of ten #KoM, wheigh anchor!
#ERNReCONNET. More than a Network.
T2T is a well know approach used by physicians worldwide that consists of:
1️⃣ Establishment of the target to achieve, usually LLDAS & remission
2️⃣ Take the necessary steps to achieve it.
3️⃣ Asses and monitor the achievement.
4️⃣ Change/adjust treatment if not achieved.
Welcome to Lupus Europe. To join our pan-European community, please contact us.