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.
🙌📖It's finally in our hands!
🌏Discover the #EULAR Manifesto, a comprehensive policy roadmap that prioritises research, enhances quality of care, and shapes social policy for those living with RMDs across the EU.
Learn more here👉https://pulse.ly/zi99cniiox
#eularADVOCACY
✅ Check 🔎 our latest update 🔄 on the #pathogenesis of #lupus ⬇️ including the role of CAR-T cells in the treatment of #SLE 🌪️
The Editor of Autoimmunity Reviews 📒 has granted a 50-day FREE access for all using the following LINK: https://authors.elsevier.com/a/1js2M5alwYCAzn
🔴Inequality in healthcare is a serious barrier for those with #RMDs, both in South America & globally.
🎙️Tune in to the #eularPARE podcast as @Jeanette_Lupus speaks with @pinkycito from @redasopan & @Lupus_Chile about how this issue affects patient care
https://open.spotify.com/episode/56xtnDwlIk9KmrJV5Ridnr
✅ For those of you interested in DNA sensing - a critical step in the pathogenesis of #Lupus, check the viewpoint by the recipient of the Albert Lasker prize himself, in this issue of the JAMA ⬇️
✅ What's new in the #pathogenesis of systemic #lupus? Any novelties in #cutaneous lupus ⬇️👀 (CLE)? Are CAR-T cells really able to 'reset' the immune system? Check our review with @FChasset @PrTmartin_RESO with A FREE ACCESS LINK valid for 50 days at https://authors.elsevier.com/a/1js2M5alwYCAzn
✅ Updated timeline for #Lupus trials ⬇️ including successful trials for dapi & obi ! As always, please do let me know if something is not correct and I will reupdate the slide 🔄
🧑🔬 Become a Patient Research Partner and make a meaningful impact in research!
🖥️With this course you’ll gain the knowledge and skills to represent the patient perspective, ensuring that research truly reflects patient needs and experiences.
👉https://esor.eular.org/course/view.php?id=487
🎉Abstract submission for the EULAR 2025 Congress opens TODAY!
👉 Find out more: https://pulse.ly/vc82ekpemg
#EULAR2025 #Rheumatology #Research #AbstractSubmission
✅ Yes! As many of you guessed, the October theme of the #kicklupus campaign is... vaccines!
💉 Vaccination is a crucial topic, especially for individuals dealing with lupus, as lupus has been proven to make people more susceptible to infections and complications. Therefore, promoting vaccination is paramount in the care and overall well-being of people with lupus.
🛡️ Vaccines play a vital role in bolstering the immune response against various diseases, reducing the risk of infections and their potential severity. For individuals with lupus, getting vaccinated can be a game-changer, providing added protection against infections that could be especially challenging for their immune systems.
Join us in the #kicklupus challenge! Share how you prevent infections in lupus. Your experiences and insights are valuable in creating a supportive community and raising awareness about the importance of proactive measures in managing lupus effectively.
Together, we can make a difference! 💜
💎 In line with our commitment to spreading awareness and information, we invite you to explore the importance of vaccination in patients with lupus through the #Lupus100 website. This initiative offers resources and educational materials in multiple European languages, facilitating access to critical information about lupus and vaccinations ⤵️
lupus100.org/en/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
Remember you can also check on #lupusgpt in your preferred language! lupusgpt.org/
🇩🇰 lupus100.org/da/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇩🇪 lupus100.org/de/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇪🇸 lupus100.org/es/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇬🇷 lupus100.org/el/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇷 www.rhumatismes.net/index.php?id_q=863
🇮🇹 lupus100.org/it/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇳🇱 lupus100.org/nl/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇴 lupus100.org/ro/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇫🇮 lupus100.org/fi/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇺🇦 lupus100.org/uk/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
🇷🇺 lupus100.org/ru/questions/how-should-you-manage-your-vaccinations-when-you-have-lupus
1 CommentComment on Facebook
Got the Covid vaccin last week, Saturday the flu vaccin. #kicklupus
🤩 We are thrilled to see our Chair, Jeanette Andersen, hosting the latest EULAR PARE podcast!
🎙️ In this episode, Jeanette speaks with Gonzalo Tobar, a representative of Asopan and Agrupación Lupus Chile, who shares valuable insights into the challenges faced by people living with #RMDs in South America, highlighting the unequal access to healthcare and the inspiring work of patient organisations.
🦋 At Lupus Europe, we are well aware that inequities can be major barriers affecting the quality of life and health outcomes of #Lupus patients, not only in South America but also in Europe.
📊 This issue is so significant that it has been included in our strategic plan for 2025, and we will soon share more about our efforts to understand it better.
🌟 Don't miss out on this powerful discussion on how communities are overcoming barriers to care.
open.spotify.com/episode/56xtnDwlIk9KmrJV5Ridnr
0 CommentsComment on Facebook
🍂 Welcome October, welcome new #kicklupus challenge!
🤔Can you guess our October theme based on this sneak peek image?
👀 Stay tuned because this month, we're unveiling a powerful way to fortify our health!
3 CommentsComment on Facebook
Thank you! Great moment indeed.
Stop smoking
I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.
🔴 People with #Lupus are twice as likely to develop cardiovascular disease as healthy people.
👀 Learn more about cardiovascular risk management in rheumatic and musculoskeletal diseases (RMDs) with the EULAR recommendations ➡️ ➡️ ard.bmj.com/content/81/6/768
🔴 𝗖𝗮𝗿𝗱𝗶𝗼𝘃𝗮𝘀𝗰𝘂𝗹𝗮𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗶𝘀 𝗸𝗲𝘆 in RMDs Like #Lupus.
1️⃣ Always talk to your physician about preventive measures.
2️⃣ Work to minimise risk factors ⤵️
- Don't smoke🚭
- Practise exercise🏃♂️
- Have a healthy diet🍏
#WorldHeartDay
1 CommentComment on Facebook
I am so delighted to have found this page, very supportive and informative. I was diagnosed with SLE lupus in 2015, my symptoms started out with severe fatigue, poor balance, numbness, heat intolerance, and anxiety. I was unable to go back to work, so I tried analgesics for about 6 years. Tried every shot available, and all made me sick. In November 2023, I started on lupus Herbal formula from www. multivitamincare .org , the treatment worked incredibly for my SLE condition. I used the Natural Lupus Herbal formula for a total time period of 3 months, it totally reversed lupus. I had a total decline of all symptoms including joint stiffness, ulcers, and others. Sometimes, I totally forget I ever had Lupus.
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