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 CornetAn ERN (European Reference Network) ReCONNET Survey on awareness and knowledge of Clinical Practice Guidelines in rare and complex connective tissue disorders will be open until 10th February 2018. These surveys provide vital information to the doctors and researchers setting guidelines for our care. This survey can be filled in by patients or their families […]
📣If you are living with #lupus or other #autoimmunediseases, please give 15 minutes of your time to better understand what needs to be improved 😊
Ask your healthy peers to take the survey as well 🤝
Available in 18 languages 🌎🌍🌏
Thanks for helping the @CoVADStudy ❗️
🔊 Listen to the latest #eularPARE podcast, "Living with an #RMD in South America - challenges and insights!"
Listen here!
Spotify: https://pulse.ly/i2nrbvkjie
Apple: https://pulse.ly/w76keti5b0
#EULAR #Rheuma #Podcast
@eularyoungpare
🚨 According to Profs. @RMD_clinic & @lupusreference, 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀 𝗮𝗿𝗲 𝗮 𝗿𝗶𝘀𝗸 𝗳𝗮𝗰𝘁𝗼𝗿 𝗵𝗶𝗴𝗵𝗲𝗿 𝘁𝗵𝗮𝗻 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 for mortality in #SLE patients 👉 https://buff.ly/3rUWfTt
🙌 This month, we talk about vaccination to #KickLupus
It was an honour to be invited to give the Key Note talk on Neuropsychiatric Lupus & Mental Health in #SLE at the @LupusEurope Convention in Slovakia this weekend
Such a huge privilege to hear about the great work that the organisation is doing to support people with lupus 💜
Don’t misss this EMEUNET podcast for WAD (World arthritis day)!
🎉Last Friday, our Youth Meeting took place. It was an incredible day!
📚It was packed with activities designed to inspire & connect our young members. From workshops on information on lupus to sharing Lupus Europe’s strategy to games, exercise, & moments to connect & reflect!
Currently at @LupusEurope convention. Loving that they do a walk with #alpacas in Lupus Norway @Revmatikerforb how cool is that @LUPUSUK #lupus
✨A true highlight of the #LupusConvention is reconnecting with friends & colleagues—and receiving thoughtful gifts like these beautiful handmade creations from Lupus Slovakia!
🤩Plus, we’re enjoying insightful talks & sessions & learning so much from each other along the way!
🦋 Living with lupus can feel overwhelming when you're trying to sift through an ocean of information that may or may not be reliable.
🥵 Are you tired of endless searches?
😵💫 Do you feel overwhelmed by medical jargon?
🙌 It’s time to try #LupusGPT! Our AI-driven tool is designed to cut through the noise, providing you with trusted, doctor/patient-validated information.
💫 Whether you're a newly diagnosed patient, a long-term one, or a caregiver, #LupusGPT offers the support and knowledge you need to make informed health decisions alongside the invaluable support and guidance of your medical team.
🌍 Plus, with availability in multiple languages, #LupusGPT ensures that high-quality lupus information is accessible to everyone, no matter where you are or what language you speak.
Visit s.mtrbio.com/dkbhqzgrrd now and share this post to help us spread the word. Help us empower more individuals to gain control over their lupus management!
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⁉️ Do you want to know more about diet & #lupus?
✅ Check out the #Lupus100 website, where you can find reliable information about lupus in a patient-friendly language.
🔊 Whether you're looking for tips on living with lupus, treatment options, or understanding lupus better, this website has it all. Plus, it's available in multiple European languages! Making it accessible to a wider audience.
Check it out now! ⬇️
lupus100.org/en/questions/should-we-follow-a-special-diet-in-lupus
🇩🇰 lupus100.org/da/questions/should-we-follow-a-special-diet-in-lupus
🇩🇪 lupus100.org/de/questions/should-we-follow-a-special-diet-in-lupus
🇪🇸 lupus100.org/es/questions/should-we-follow-a-special-diet-in-lupus
🇬🇷 lupus100.org/el/questions/should-we-follow-a-special-diet-in-lupus
🇫🇷 www.rhumatismes.net/index.php?id_q=854
🇮🇹 lupus100.org/it/questions/should-we-follow-a-special-diet-in-lupus
🇱🇹 lupus100.org/lt/questions/should-we-follow-a-special-diet-in-lupus
🇳🇱 lupus100.org/nl/questions/should-we-follow-a-special-diet-in-lupus
🇵🇹 lupus100.org/pt/questions/should-we-follow-a-special-diet-in-lupus
🇷🇴 lupus100.org/ro/questions/should-we-follow-a-special-diet-in-lupus
🇫🇮 lupus100.org/fi/questions/should-we-follow-a-special-diet-in-lupus
🇺🇦 lupus100.org/uk/questions/should-we-follow-a-special-diet-in-lupus
🇷🇺 lupus100.org/ru/questions/should-we-follow-a-special-diet-in-lupus
Catalan: lupus100.org/ca/questions/should-we-follow-a-special-diet-in-lupus
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✅ Yes! As many of you guessed, the January theme of the #kicklupus campaign is... diet! One of the New Year's resolutions that is among the most commonly chosen by people every year.
🤓 Did you know that a well-balanced diet plays an essential role in the holistic approach to #lupus management🦋? It also helps support overall health and well-being.
🥦 From incorporating the Mediterranean diet🐟 to staying hydrated💧, small dietary changes can greatly impact the lives of those with lupus.
💪 Let's make this a year of health: join us in this challenge!
📸 Share your journey and tips and tricks towards a healthier diet using the hashtag and inspire others to make positive changes too.
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🛠️ We are currently performing maintenance to enhance your experience with #LupusGPT.
✅ Adjustments & updates are normal and expected.
We appreciate your understanding & support as we fine-tune our tool to better meet your needs.
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I come from a Pacific Island nation called Papua New Guinea. My country shares borders with Indonesia, Australia, and the Solomon Islands. I usually search on YouTube for interesting documentaries. Whilst looking up YouTube videos, I came across a documentary on people who suffer from SLE Lupus disease and their real treatment from www. multivitamincare .org. I had never heard of this crippling and debilitating disease affecting a lot of American Europeans. It is very tortuous to watch and hear patients who suffer. It is more like a combination of various diseases all put into one. Like a person who has suffered a stroke, plus someone suddenly becoming paralyzed, Parkinson's disease, COPD, ALS, cancer, etc., but I also get to understand that there has been a successful cure for this disease from www. multivitamin care. org It is too much for a patient to endure, such as they slowly begin to pass away if the right medication is not taken . Having a positive mind is a powerful tool . My prayers go out to Lupus patients and their caregivers.
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