Alain CornetFor those of you who may have missed it or who are not signed up on our mailing list, here is the link to the convention report for LUPUS EUROPE’s annual convention which was held this year from 28th September – 2nd October 2016. If you don’t currently receive our newsletters and emails and would like […]
Alain Cornet2 weeks to go, Running for Lupus Hej, Tere, Hei, Χαιρετώ, Bonjour, Hallo, Helló, Ciao, Olá, Ahoj, Hallå, Hola, Grüezi, Halló, Dia dhuit, Shalom, As-salam alaykom, Buna, Sveiki, Zdravo Many things have happened since the last blog post. As you can see in the above picture, the t-shirt design has been finalised and ordered for printing. You will […]
Alain CornetThe 18th edition of the EULAR Annual European Congress of Rheumatology is now open for registration! To find out more, click here.
Alain CornetThere has been a good response to the sunscreens survey with 2,000 respondents so far. To really make sure this survey is a good reflection of our situations, more responses are needed. Please continue to share the link in your patient network. The deadline for responses is 31st October 2016. The European Society of Cutaneous Lupus […]
Alain CornetToday is World Arthritis Day. A day being honoured by The EULAR Conference on reducing the burden of chronic diseases in the workplace for people with RMDs. The conference is focusing on identifying and discussing relevant issues related to the working environment and how to move forwards. The conference was opened by EULAR president Prof. Gerd R. […]
Alain CornetEPF publishes a guide for patient organisations on the new Data Protection Regulation The new Regulation on personal data protection (EU/2016/679) was published in May 2016 and will apply from May 2018. It provides more rights to citizens to be better informed about the use made of their personal data, and gives clearer responsibilities to […]
The LUPUS EUROPE convention has come to a close. Four intensive days of work, sharing, inspiration, education and exchange! We have all learned a lot from each other and from the wonderful speakers who shared their knowledge with us. A huge thank you goes out to our members who made this convention a great success […]
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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