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 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 […]
Marisa Costa20th annual European Congress of Rheumatology took place in Madrid in June 2019. The Congress was hosted by the European League Against Rheumatism (EULAR) and jointly organised with the Paediatric Rheumatology European Society (PReS). There were 14,500 attendees from 120 countries and the scientific programme included presentations from 4,900 abstracts submitted. Three Trustees attended the […]
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 Cornet“INTEGRATing patient reported outcomes, clinical data and quality indicators to physician drive data in clinical management of chronic rheumatic diseases: the paradigm of Systemic Lupus Erythematosus” You may recall a request from Lupus Europe, on behalf of the Integrate Project, to complete an on-line survey. Over 750 people completed the questionnaire which is a fabulous […]
Alain Cornetin only 2 days, the INTEGRATE and ERN ReCONNET surveys will be closed. Yet, we miss feedback from several countries, and only have 1 or 2 answers from others. It would really help our understanding of lupus and the interactions with Doctors if we had more answers from more locations. please help us gather that […]
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 CornetIn 1989, LUPUS EUROPE (then named ELEF)’s first convention took place near Brussels, in the historical city of Leuven. 29 years later, LUPUS EUROPE 2018 annual convention will once again take place in Leuven, and we are looking towards a record attendance with already 41 registrations confirmed. As the convention unfolds, we will make available […]
Alain CornetToday is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals. Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from […]
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 […]
Yes! #LupusGPT is a multilingual AI tool that delivers dr & patient-validated results from selected sources.
Also #EasyLupus! A simplified version that makes info even more accessible by breaking down complex medical terms into easy-to-understand language https://easy.lupusgpt.org/
It was an absolute pleasure to speak with @Jeanette_Lupus of @LupusEurope about the work I am undertaking on abnormal immunometabolism as a possible cause of fatigue in #SLE at the @SLEuroSociety meeting earlier this year 🧪
@LupusEurope thanks for pointing this out. Many to most #lupus #SLE patients with #Sjogrens do not even know they have it. A study in a major rheumatologic clinic showed that this was the fact in patients with MCTD. I highly suspect the same would occur in a lupus study
July
🚨All the updates you want about #pregnancy in #rheumatology are in this @TheLancetRheum series 🤰
🎧Do not miss the related podcast
@KarenS_LDN @nelson_piercy @drbags71 @Graversgaard_C @Jeanette_Lupus @LupusEurope @IonaThorne @EMEUNET @TadejAvcin
Listen to our latest podcast🎙️
Deputy Editor, Sophie Woolven, spoke to Karen Schreiber (@KarenS_LDN), Ian Giles, and Angela Tincani about the Pregnancy and Rheumatic Diseases Series
‼️Today is #WorldSjogrensDay, a chronic autoimmune disease that affects 14-17.8% of lupus patients.
💁♀️ Although Sjögren's is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant & disabling symptom.
➡️ Follow @SjogrenEurope to know more
🩺 Calling doctors:
#EasyLupus is the easyread version of #LupusGPT. Made to give easy & valid info on #SLE for patients in many languages. Currently in beta & being tested.
Go to: https://easy.lupusgpt.org/ to try the tool & e-mail secretariat@lupus-europe.org with any feedback!
✅ Happy to report that 100+ #Lupus experts from @ERN_RECONNET @SLICC and @SLEuroSociety have participated to the FINAL stage 🏆 of the taskforce for rare #SLE manifestations. In just a few weeks (data analysis) we'll have clear recommendations for these complex manifestations 👍
🌍 Socio-economic factors can significantly impact the health outcomes of people with SLE, particularly those from economically or socially disadvantaged backgrounds. A multitude of issues such as limited access to transportation, low health literacy, insufficient healthcare resources can influence various aspects of access to healthcare, and affect the management and outcomes of diseases like #lupus
👨⚕️ In this insightful YouTube video, Dr. Daniel Guimarães de Oliveira discusses the crucial need for holistic care approaches that take into account a person's wider context, including these non-clinical factors.
🎥 Watch the video now to learn more about these insights and the need for tailored healthcare strategies that address a person’s broader context.
www.youtube.com/watch?v=RT2Qtllx2-s
13 CommentsComment on Facebook
Daniel Guimarães de Oliveira - Imunologia Clínica
That's true! Many people with problems are compelled to stop their cures because they do not have the money
I was never a person who believe in herbs as a means of treatment, now I know better, herbs has more efficiency than any pharmaceutical medicine. I suffered from FND with no results from pharmaceutical medicines, but after using herbal medicine from Dr Ehota I got cured of my ailments. I will advice you to try herbal medicine as well Contact Dr Ehota Dr Ehota
‼️Today is #worldsjogrensday, a chronic autoimmune disease that affects 14-17.8% of #lupus patients.
💁♀️ Although Sjögren's is a systemic disease that goes far beyond dryness, dryness remains a frequent, significant and disabling symptom.
➡️ Follow Sjögren Europe to know more.
5 CommentsComment on Facebook
I know
Truly, natural remedies do work. If they didn't, we wouldn't have used them for thousands of years. And, pharmaceutical companies wouldn't be studying plants, taking extracts of them, and patenting them as drugs.this is not a claim or lies I was totally cured from herpes and neuropathy by Dr osewen, His remedy is surely the best. I suggest you try him out if you are having any health challenges and also get cured too, give him a try 👇👇 www.facebook.com/114932024817210
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🪫 Fatigue is one of the most common and challenging symptoms of lupus. Even in remission, this persistent issue can continue to affect the daily lives of those with lupus, highlighting the complex nature of this autoimmune disease and its symptoms.
🔬 On our YouTube channel, Dr. Chris Wincup shares groundbreaking research on lupus-related fatigue, presented at ELM. This study offers new insights into some of the possible underlying mechanisms of fatigue in lupus patients and potential therapeutic approaches.
🎥 Watch the full video to discover how these findings could potentially improve the quality of life for those living with lupus.
youtu.be/R5usgt-soE4?si=o426qWO-TP7WiMik
4 CommentsComment on Facebook
Wow, it would certainly make an enormous difference in our lives!!! Iron deficiency can be difficult to overcome because of stomach problems but it would certainly be worth trying to get rid of this perennial fatigue.
Natural🌿remedies do work. If they didn't, we wouldn't have used them for thousands of years. And, pharmaceutical companies wouldn't be studying plants, taking extracts of them, and patenting them as drugs.this is not a claim or lies I was totally cured from a deadly disease and neuropathy by Herbalist His remedy is surely the best. I suggest you try him out if you are having any health challenges and also get cured too, give him a try 👇👇 Dr Osabor herbal home
Herbal remedies is the most recent cure I can only imagine I thought it was lies when I saw some one testifying about Dr Osabor. I was so happy that I get back my health, and with the help of dr Osabor. I was cured you can also give a try 👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻 www.facebook.com/Dr-osabor-Herbal-home-113980518216580/
👨⚕️ Don't miss Prof. Ian Bruce talking about the Systemic Lupus Erythematosus Damage Index (SDI) revision!
📈 The SDI is a tool designed to track lupus progression and impacts treatment decisions worldwide.
🔍 The revised SDI aims to enhance accuracy, include pediatric cases, and update outdated definitions, ensuring that every patient’s condition is comprehensively evaluated.
🎥 Do you want to explore these updates more thoroughly and understand what they mean for patients and healthcare providers? Click the link to watch the full video!
youtu.be/okAJvPAzIWg?si=6dwHxhoaqS0OJ7zm
0 CommentsComment on Facebook
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