Zoe Karakikla-MitsakouSandra Schaftner volunteers for the German Lupus Group, Lupus Erythematodes Selbsthilfegemeinschaft e.V.. She is also one of the German-version translation volunteers of Lupus100. Lupus100.org is a MULTILINGUAL website run by Lupus Europe that contains clear answers to 100 questions about lupus. Lupus experts and patients have worked collaboratively on the website. Lupus100.org has also been […]
Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Ram Blass from Inbar who talked to us about the wonderful work the […]
Zoe Karakikla-MitsakouWelcome back to our blog series on National Member News! We are excited about getting our National Member news out to the world, so more people can find out what it is happening in each country and each member organisation! We caught up with Marga Schut and Wendy Zacouris from NVLE who talked to us about the […]
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 CornetLUPUS EUROPE is very committed to the success of the European Reference Networks (ERN), in particular ReCONNET where we have a very active role. One of our key contributions is to raise the patient voice. Professor Hachulla is seeking our input on unmet needs in the area of Therapeutic Education. We would like the questionnaire […]
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 […]
Alain CornetOn December 6th Katharine Wheeler participated in the closing conference for EPF’s campaign on Access to Healthcare for All. At the conference EPF presented their Roadmap for Universal Health Coverage for all. Katharine was invited to speak as a patient organisation representative and stressed the importance of leaving no-one behind if we want to achieve […]
Alain CornetThe LUPUS EUROPE annual convention has just come to a close. Hosted in Milan by Lupus Italy on the occasion of their 30thanniversary, the convention was an inspiring event centred around the theme of “pain, fatigue and stress”, with Dr Chiara Tani as a key note speaker. Benefitting from the Italian Lupus Clinic experience, we […]
Alain CornetToday is World Lupus Day, a great time to be thinking about bringing the Lupus World together. ‘Meet the Lupus World’ is our theme for the Lupus Summit in Vienna on 5th September 2015. The summit will take place as an integral part of our annual convention. Make sure your group is represented by getting in touch with […]
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 […]
✅ Today, focus 🔎 on the 4th #EULAR #recommendation for #Lupus 🐺 As you can see:
➡️ CYC is suggested for severe (organ/life-threatening) forms 🔥
➡️ #RITUXIMAB is recommended for REFRACTORY disease 💪 but I know that for MANY of you 🌏🌎🌍 RTX is the ONLY biologic available 😢
🔴 People with #lupus are twice as likely to develop cardiovascular disease as healthy people.
👀 Learn more about CV risk management in RMDs with the @eular_org recommendations by @SavinoSciascia @Lupusdoc @ramos_casals et al.➡️ ➡️ https://buff.ly/46nDCWT
#WorldHeartDay
🌺Thank you for your active participation & enthusiasm, which has made our webinar exceptional.
We hope that Dr. Bosch has provided valuable knowledge & shed some light on the incredible possibilities technology can bring to healthcare.
Stay tuned! More webinars to come soon!
‼️ Exercise is not only fundamental to general health but especially vital for individuals facing RMDs like #lupus.
➡️ According to the @WHO, physical inactivity is a significant global health risk, underlining the importance of staying active for overall well-being.
#KickLupus
✅ Do you REMEMBER the #PHOTOLUP Study 🌞 about #photosensitivity in #Lupus? I'm VERY HAPPY to report that the paper has been ACCEPTED in a very good journal 👍 Thanks to ALL of you with lupus who have contributed 🙏 and of course we will soon show the detailed results 👌
🚨 Only one day left!
🌟 Join our Webinar on digital health! 🌟
⏲️ Time is running out!
📧 Email: secretariat@lupus-europe.org and secure your spot!
✅ Engage with Dr. Philipp Bosch.
✅ Explore tech's potential in healthcare.
🗓️ Sep 28 (tomorrow!)
🕗 20:00 CET
✅ In line with the new #EULAR recommendations, #hydroxychloroquine is recommended for all with #lupus (unless contraindicated). If you haven't done so yet, have a look 👀 at our Editorial in @TheLancetRheum ⬇️ regarding #EMA concerns about the potential teratogenicity of #HCQ
‼️Lupus can have an impact on mental health.
🚶♀️Exercise can help #KickLupus by managing stress, anxiety & depression.
It can be a good aid in promoting relaxation & ⬇️ stress, offering a positive coping outlet.
Remember: #MentalHealth is important. Talk to your doctor about it
🔴 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 ➡️ ➡️ buff.ly/46nDCWT
🔴 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
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🌺Thank you for your active participation & enthusiasm, which has made our webinar truly exceptional.
We hope that Dr. Bosch has provided valuable knowledge & shed some light on the incredible possibilities technology can bring to healthcare.
Stay tuned! More webinars to come soon!
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If you have any questions or any points you would like to raise, please feel free to do so here! 😃
Only one day left for the great day!
🌟 Don't miss our webinar on digital health & patient care! 🌟
⏲️ Time is running out to secure your spot at our transformative webinar.
💻 In this rapidly evolving healthcare landscape, digital health is the way forward, and we want you to be at the forefront of this revolution.
Here's a glimpse of what awaits you:
✅ Engage in enriching discussions led by the esteemed Dr. Philipp Bosch.
✅ Explore the boundless potential of technology in advancing healthcare.
🗓️ Date: September 28th (tomorrow!).
🕗 Time: 20:00 CET.
This is your opportunity to be part of a digital health revolution that's shaping the future of patient care.
Join us and empower yourself with the knowledge that can transform lives! 📱🏥
The webinar will also be streamed live on Facebook. 🎥
Secure your spot now by registering:
📧 Email: secretariat@lupus-europe.org
If you have registered for Zoom already, please ensure you attend via Zoom 🤗.
See you at the webinar!
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