Alain CornetWe are currently at the Eular PARE congress in Dublin and delighted to report that our World Lupus Day poster has been very well received. Here are some of the comments, among many: “Very evocative”, “A really strong message”, “It really talks to me of control, not a question of being ‘friends’ with the wolf […]
Alain CornetIf you are a member of one of LUPUS EUROPE’s member organisations and are interested in getting more involved as a patient advocate – spreading awareness, attending events, working on specific projects… we would love to hear from you. Even if you can only offer a little of your time, your contribution could make a […]
Alain CornetInterview with Jan Geisler, director of EUPATI, on the Patients’ Academy. He answers questions such as: “What is the goal of EUPATI?” “Why did you feel it was necessary to create such an academy?” “What is the profile of the students enrolled in the EUPATI course?” “What will they (the students) learn?” To view the […]
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
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?
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🌟 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! 💪
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📆 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? 💪
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💪🏻🍀
‼️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
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