Alain CornetThe LUPUS EUROPE board met in Milan for a fruitful week-end of meetings from 9-11th of December. Several topics were on the agenda, including the very first preparations for the 2017 convention and mapping out the very busy 2017 calendar of events and work sessions. As well as the board (minus the wonderful Anne who was […]
Alain CornetThe Swedish Lupus group have sent us their report of the LUPUS EUROPE convention in Würzburg. It’s in Swedish – of course – but we thought it would be nice to share with you! Have you made a convention report for your group’s newsletter or magazine? If so we’d love to share it here too […]
Alain CornetToday, Tuesday, December 6th Chair Kirsten Lerstrøm, LUPUS EUROPE, was invited to address the European Parliament Interest Group on Rheumatic and Muscoskeletal Diseases (RMDs) on Patients’ Perspectives on Improving Access to Care and Therapies for People with Rare RMDs at the meeting of “Policy Issues and Challenges in the Treatment and Care of Rare Diseases”.
📣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!
🌟This December, we're embarking on a mission that holds the key to effective #lupus management.
🤔 Can you crack the code and guess the theme that ties us together this month?
Stay tuned as we unveil the secret to a healthier, empowered lupus journey.
🚀 Let the guessing game begin!
#kicklupus
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How to try "tame the Wolf" or at least not let "Wolfie" run amock perhaps?
🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.
In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have:
🔹 57.9% of respondents said SLE negatively affected their careers.
🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.
🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.
🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.
#WorldDisabilityDay
#IDPWD
#InternationalDayOfPersonsWithDisabilities
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🚨 One of the several factors that could potentially trigger or worsen #lupus flares is 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀.
⚠️ Did you know that around 𝗵𝗮𝗹𝗳 𝗼𝗳 #𝗦𝗟𝗘 𝗽𝗮𝘁𝗶𝗲𝗻𝘁𝘀 𝗲𝘅𝗽𝗲𝗿𝗶𝗲𝗻𝗰𝗲 𝘀𝗲𝘃𝗲𝗿𝗲 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻s, with 11–23% of hospitalisations linked to these complications?
🦠 Infections not only impact overall health but are also considered a higher risk factor for mortality in lupus patients than the disease activity itself.
💎 This highlights the importance of 𝘁𝗮𝗸𝗶𝗻𝗴 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝘃𝗲 𝗺𝗲𝗮𝘀𝘂𝗿𝗲𝘀, such as vaccinations, to reduce infection risks and keep your lupus under control.
#kicklupus by talking to your physician about vaccination and other prevention measures!
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🚨 According to Profs. @RMD_clinic & @lupusreference, 𝗶𝗻𝗳𝗲𝗰𝘁𝗶𝗼𝗻𝘀 𝗮𝗿𝗲 𝗮 𝗿𝗶𝘀𝗸 𝗳𝗮𝗰𝘁𝗼𝗿 𝗵𝗶𝗴𝗵𝗲𝗿 𝘁𝗵𝗮𝗻 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗮𝗰𝘁𝗶𝘃𝗶𝘁𝘆 for mortality in #SLE patients 👉 buff.ly/3rUWfTt
🙌 This month, we talk about prevention to #KickLupus
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