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 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 […]
Marisa Costa20th annual European Congress of Rheumatology took place in Madrid in June 2019. The Congress was hosted by the European League Against Rheumatism (EULAR) and jointly organised with the Paediatric Rheumatology European Society (PReS). There were 14,500 attendees from 120 countries and the scientific programme included presentations from 4,900 abstracts submitted. Three Trustees attended the […]
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 Cornet“INTEGRATing patient reported outcomes, clinical data and quality indicators to physician drive data in clinical management of chronic rheumatic diseases: the paradigm of Systemic Lupus Erythematosus” You may recall a request from Lupus Europe, on behalf of the Integrate Project, to complete an on-line survey. Over 750 people completed the questionnaire which is a fabulous […]
Alain Cornetin only 2 days, the INTEGRATE and ERN ReCONNET surveys will be closed. Yet, we miss feedback from several countries, and only have 1 or 2 answers from others. It would really help our understanding of lupus and the interactions with Doctors if we had more answers from more locations. please help us gather that […]
Katharine WheelerThe LUPUS EUROPE 2018 convention is underway in Leuven, Belgium and among the serious speeches on medical and psychological topics, we were delighted to be presented the beautiful (and very creative) word cloud entries in the Kick Lupus competition. All in all there were 35 entries to the competition, a great response! The judges on […]
Alain CornetIn 1989, LUPUS EUROPE (then named ELEF)’s first convention took place near Brussels, in the historical city of Leuven. 29 years later, LUPUS EUROPE 2018 annual convention will once again take place in Leuven, and we are looking towards a record attendance with already 41 registrations confirmed. As the convention unfolds, we will make available […]
Alain CornetToday is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals. Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from […]
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 […]
Interested in CAR-T cell treatment in #lupus?
🌟Then, don't miss out on our next webinar!
🔬 Explore with Prof. Ed Vital the opportunities & challenges of this therapy & learn about CAR-T in #SLE.
🗓️ Dec 5, 19:00 CET
📨 Register at secretariat@lupus-europe.org
💫Join our EULAR PARE Medical Webinar on the topic: "Biomarkers - what are they and how can they be useful in rheumatology?"
💻7 December, 16:00 CET
Speaker:
🗣️Prof. Chris Edwards, Consultant Rheumatologist and Co-Director of NIHR.
Learn more here 👉 https://pulse.ly/9w2zm6ji51
Want to stay up to date with #SLE #Lupus #autoimmunity #research Please check out latest content page #biomarkers #childhoodlupus #nephritis #epidemiology #immunology #cutaneous #outcomes
Proud to announce the publication of the 2023 @eular_org recommendations for managing fatigue in inflammatory rheumatic diseases. Addressing fatigue is crucial for enhancing the quality of life in these conditions! Grateful for the collaborative efforts.
❗❗❗Last days to participate in the #LUPHPOS survey
⬇️⬇️⬇️
🗓️Deadline: December 1st 2023
@EMEUNET @SLEuroSociety @ern_reconnet @SEReumatologia @JOVREUM
📢Tuesdays are Research Webinar days! We would like to invite you to be part of the discussion!
🙋♀️ Learn more by taking a look at our inspiring programme
Register here!👉 https://pulse.ly/0a3t5iy5w8
Fatigue is a BIG thing in rheumatic diseases #RMDs
Read the 2023 EULAR recommendations for the management of fatigue in people with inflammatory rheumatic and musculoskeletal diseases
✅ Happy to announce that together with an amazing team of international experts🧑🎓 & patient-partners 👏 we have concluded our #taskforce on #physical activity & exercise in #lupus 🏃🤾🚴🏋️ This means that we will SOON be able to come to you all with clear recommendations 👍
🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood.
✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲.
🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.
🤔 So, how can we #kicklupus with prevention?
1 CommentComment on Facebook
🌟 Calling all Lupus Patient Organisation Volunteers! 🌟
🗣️ Your Voice Matters!
We want to hear from YOU!
❓ Are you a volunteer for a lupus patient organisation?
Your insights are invaluable! 💎
Participate in our quick survey, taking just 2-3 minutes of your time, and help us understand volunteer motivations better.
Your feedback will help shape the future and help us understand what we should work on to make our volunteers happier and more motivated.
✍️ You can answer in English or in your own language.
Ready to share your thoughts?
🔗 Click the link below and let your voice be heard!
s.surveylegend.com/-NfBafeCoorOLsOkK1Du
🤗 Thank you for reading this post and considering answering the survey!
Together, we can make a huge difference! 💪
1 CommentComment on Facebook
🤷♂️
📆 New month, new challenge!
🍁 As the calendar flips to November, our #kicklupus campaign has a new theme!
🤔 Can you guess what this month's theme is all about?
💡 Hint: It's all about implementing measures to help us hold #lupus at bay!
🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus.
Ready to embark on this journey with us? 💪
1 CommentComment on Facebook
💪🏻🍀
‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to:
🔹Fear
🔹Lack of trust
🔹Feeling of unsafety
🔹Belief in good health
🔹Lack of recommendations by doctor
💡Let's #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus.
𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares
One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.
✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.
𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines
✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.
Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.
𝐌𝐲𝐭𝐡 3️⃣: Lupus patients can't receive live vaccines
✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.
It is crucial this is assessed on a case-by-case basis by your doctor.
𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms
✅ Vaccines don't worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients.
𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission
✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.
For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis.
𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life
✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.
Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you
🌏 Help us #KickLupus by raising awareness of the importance of immunisation.
Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:
ard.bmj.com/content/79/1/39
0 CommentsComment on Facebook
;
