Zoe Karakikla-MitsakouThis blog post is our second in this series; we are so excited about this blog series and getting our National Member news out to the world, so more people can find out a lot more about what it is happening in each country and each organisation! We are committed to have a dedicated […]
Zoe Karakikla-MitsakouWe believe that patient input into scientific events, like the European Lupus Meeting or EULAR, is incredibly important. Our hope was that by watching our Webinar on “How to make a scientific poster” by Simon Stones you would get the tools and know how to create a poster for those events! Simon Stones has a […]
Zoe Karakikla-MitsakouThis post marks the start of a regular blog series for Lupus Europe. We aim to have a dedicated blog with a different National Member each month. We are very excited about this blog series and getting our National Member news out to the world, so more people can find out a lot more about […]
Zoe Karakikla-MitsakouToday is Rare Disease Day! Lupus is a rare disease in Europe, although for those living with it, it doesn’t feel rare at all! There are estimated to be less than five in 10,000 people in Europe who are living with lupus. Having a rare disease means that most people around you don’t have any […]
Zoe Karakikla-MitsakouThe lovely Petra Balážová from Slovakia has a wonderful blog called Petronela’s Journey, where she talks about healthy eating, life with lupus and so many other very interesting topics. Petra has kindly allowed us to republish one of her video interviews with rheumatologist Dr. Alessia Alunno here, on a very interesting topic; lupus fatigue. Here […]
Zoe Karakikla-MitsakouThe Hellenic League Against Rheumatism (ELEANA) with the contribution of Mr. Michael Konstantinidis, who is the writer and the art director of the total project and of the arts community, created and coordinated a special project for Lupus. This was done with the hope that it would contribute to relieving the stigma the disease bears, […]
Zoe Karakikla-MitsakouDuring the Pandemic various online webinars were given about the Psycho-Social Impacts of COVID-19 on Patients with Chronic Skin Conditions. Generally they showed that: Patients with chronic skin conditions (auto-immune disease related) using HQC have no higher risk of getting Covid. When using immune suppressants, patients should be more careful. When infected with Covid, consult […]
Marisa Costa
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 […]
🙌📖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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