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 […]
Alain CornetThe non-profit organisation ClAIR which groups lupus, arthritis and scleroderma associations (among them our French-speaking Belgian member) is organising a virtual congress from tomorrow, 30th March 2018, to 13th April included. LUPUS EUROPE will have a virtual stand in the congress. For more information, please see the press release: virtual congress CLAIR The congress is […]
Alain CornetLUPUS EUROPE was present once again at this year’s PARE conference, which was held from 16th-18th February in Brussels. PARE provides an opportunity to meet with other patient organisations who are members of the PARE network, to hear the latest updates on some of the programmes, to influence PARE’s priorities for the next year, and […]
Alain CornetLUPUS EUROPE is the organisation that brings 26 national lupus groups from all over Europe together. To better include all countries in its activities and work, it is opening up a number of interesting volunteering opportunities for members of our national groups. There is no need to be a Lupus Expert, all that is […]
Alain CornetLUPUS EUROPE BECOMES FIRST ASSOCIATE MEMBER OF SLEuro, the European Lupus Society We are very proud to announce that LUPUS EUROPE has just become the first Associate member of SLEuro, the European Lupus Society. SLEuro is a voluntary and non-political association with social and philanthropic purposes that promotes scientific research and information with regard to […]
Alain CornetAn ERN (European Reference Network) ReCONNET Survey on awareness and knowledge of Clinical Practice Guidelines in rare and complex connective tissue disorders will be open until 10th February 2018. These surveys provide vital information to the doctors and researchers setting guidelines for our care. This survey can be filled in by patients or their families […]
Alain CornetOn December 6th Katharine Wheeler participated in the closing conference for EPF’s campaign on Access to Healthcare for All. At the conference EPF presented their Roadmap for Universal Health Coverage for all. Katharine was invited to speak as a patient organisation representative and stressed the importance of leaving no-one behind if we want to achieve […]
Alain CornetThe LUPUS EUROPE annual convention has just come to a close. Hosted in Milan by Lupus Italy on the occasion of their 30thanniversary, the convention was an inspiring event centred around the theme of “pain, fatigue and stress”, with Dr Chiara Tani as a key note speaker. Benefitting from the Italian Lupus Clinic experience, we […]
Alain CornetMy first year with Lupus Europe – Sara Badreh Sara was elected to LUPUS EUROPE’s Board of trustees last October. Here is how she describes her first 8 months as a LUPUS EUROPE trustee: After an induction with the various trustees and learning more about LUPUS EUROPE in general, my first big conference was the […]
Alain CornetSome great news from Lupus UK – Janine, LUPUS UK National Office, organised 5 Runners in the Virgin London Marathon, 23rd April, with £4,290 being raised for LUPUS EUROPE. THANK YOU for your great work, Janine! Pictured below are Ed and Charlotte. Well done to you both and the other runners! For more information on […]
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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