Alain CornetWe’re delighted to share a really great video interview of three patient advocates telling us more about why they get involved. The video was made during the Eyeforpharma event in Barcelona and stars our very own Nuria! To view the video please click here.
Alain CornetThe 10th and 11th of May 2015, the Immunopathology and Medicinal Chemistry laboratory of the CNRS and the University of Strasbourg, Faculty of Medicine will organize the first French conference dedicated exclusively to Lupus. Held in Strasbourg, France, the conference registration is free for patients, who just need to sign-up. The message from the organizers, professors Sylviane […]
Alain CornetLupus Europe will be attending the following: EPF WE CARE – Final project meeting EUPATI – Taking off in your country – An interactive Workshop on Implementing in your country Eular PARE annual European conference – Members can read Blanca Rubio’s report from last year by following this link
Alain CornetTomorrow, 30th March, Katharine will be taking part in the second meeting of the EPF working group on Access to Healthcare. More details here.
Alain CornetDear Lupus Europe members, The theme for this year’s World Lupus Day is “Tame your wolf – Tame your lupus”. We were delighted to be able to ask Leslie Quagraine, a fellow lupus sufferer, if he could produce the artwork for our campaign. Leslie was born in London but is a long-time resident in Finland. […]
Alain CornetWork on the Lupus Tamer book is nearly complete for French and English. We will announce when it is available in e-book format.
Alain CornetFollowing on from the workshop held during the Helsinki convention, LUPUS EUROPE organised a Patient panel, bringing together 10 people living with lupus, from 7 countries, to share their experience about “treatment”, with a view to help improving the quality of life of people living with lupus. The Panel was conducted through a series of interactive presentations, […]
Alain CornetKirsten attended the Lupus Academy meeting in Rome from 27-28th February – 1st March The trustees will be meeting from 20th – 22nd March – Items on the agenda include organisation for our 2015 Convention to be held in Vienna following directly on from the ICL congress – more information on the convention coming soon!
Alain CornetWe have created this blog to keep you up to date with the latest news and happenings in Lupus Euorpe. We hope you enjoy reading it.
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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