Alain CornetHelp us understand the multiple facets of life with lupus today…
Alain CornetSince Hydroxychloroquine (HcQ) has been regularly mentioned in media as a potential medication in the fight against COVID, the number of patients highlighting unavailability issues increased substantially. With the help of its members, LUPUS EUROPE initiated a survey amongst patients to obtain broad based feedback on the magnitude and impact of the issue. Results covering […]
Alain CornetOver the past weeks, LUPUS EUROPE and several of its members have worked to improve availability of Hydroxychloroquine for people with lupus in Europe, as speculations on its possible use for COVID treatment have resulted in an increased (off-label) demand. Our objective is that all patients with a chronic condition requiring Hydroxychloroquine have access, if […]
Alain CornetLUPUS EUROPE and the ERN ReCONNET Patient representatives have launched a short survey to better understand how we can improve quality of life for people living with a rheumatic condition through better patient education. If you are a patient living with a Rheumatic condition or any other Chronic or rare disease, simply follow this link […]
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 are very proud to announce that LUPUS EUROPE has been recognized by the EMA (European Medicine Agency) as “eligible entity”, the select network of patient organizations that work with the EMA to ensure that the needs and concerns of a wide range of patients are represented via direct contact with the Agency. This status […]
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 […]
As part of its cooperation with the ERN ReCONNET, Lupus Europe is launching an important survey, which we would like to ask you to disseminate as largely as you can to people actually living with lupus. We have made the effort of providing 13 different languages, and are open to adding new ones, so we hope […]
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 CornetThe 22nd EULAR Annual European Conference of PARE took place in the stunning, historical city of Prague in the Czech Republic 5-7 April 2019 with over 120 delegates. PARE ‘People with Arthritis and Rheumatism in Europe’ forms an integral role at EULAR ‘The European League Against Rheumatism’. The presentations and workshops at the PARE Conference […]
🙌📖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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