Alain CornetDear Members, You might have received a mail from PatientView, seeking input to their study on the corporate reputation of the pharmaceutical industry in 2015— from the perspective of patient groups. We also know that some of you have not received it, and would be interested in taking part. We therefore relay the information so […]
Alain CornetOur first patient stories have arrived in our inbox. What a treat to read and something we look forward to sharing with you all in the near future. We are still looking for further contributions so, if you’re wondering what to do with all that spare time over the holidays (and beyond), don’t worry, the […]
Alain CornetInput is being sought from European Patients’ Forum members on the Patient Empowerment Charter. The deadline for feedback is 10th January 2016. For more information please click here. The European Patients’ Forum has also put together its draft position paper on Cross Border Healthcare. Feedback is invited from member groups. More information here.
Alain CornetThe final dates have been set for the Patient Panel. The Patient Panel is seeking participants and will take place in Brussels from March 11-13th 2016. This is a rare and unique opportunity for patients to participate in a truly worthwhile experience. All costs, travel, accommodation and meals are reimbursed. For further information, please click […]
Alain CornetLupuzorTM enters phase III Press release from the CNRS Paris, 15 December 2015 LupuzorTM may become the first specific and non-immunosuppressant therapy for lupus, a disabling autoimmune disease that is currently incurable. Discovered by Sylviane Muller’s team in the CNRS Immunopathologie et Chimie Thérapeutique laboratory, in Strasbourg, this peptide is the subject of a CNRS […]
Alain CornetA UNIQUE OPPORTUNITY to meet people living with lupus from around Europe LUPUS EUROPE is looking for people interested in participating in its 2016 Patient panel which will address the burden of living with lupus, with a particular focus on treatment day after day. The questions discussed by the group will cover the realities […]
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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