Alain CornetDid you know? Lupus is a Rare Disease! Lupus is rare, but not for us! Come and join us working on our vision: A fulfilling life for all people with Lupus in Europe until we have reached a world without Lupus What is a rare disease? It changes from country to country, but in Europe […]
Alain CornetWe are very proud to announce that LUPUS EUROPE has been recognized by the EMA (European Medicine Agency) as “eligible entity”, the select network of patient organizations that work with the EMA to ensure that the needs and concerns of a wide range of patients are represented via direct contact with the Agency. This status […]
Alain CornetWe would very much like to share some news with you! If you are a Lupus Europe member or potential member, volunteer or potential volunteer, or simply a member of the patient community interested in the activities of LUPUS EUROPE, join us on February 17, 2020 at 20:00 Paris time. On the agenda:– Introduction of […]
Marisa CostaI discovered in 2016 that I love running. And I created a special taste for competition. I am a master athlete and I have Lupus. I was diagnosed with Lupus at the age of 15 and I am an athlete since the age of 35. Now I’m 40 and I can’t stop running. I had […]
📣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
1 CommentComment on Facebook
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
0 CommentsComment on Facebook
🚨 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!
0 CommentsComment on Facebook
🚨 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
0 CommentsComment on Facebook
;
