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 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 Costa20th annual European Congress of Rheumatology took place in Madrid in June 2019. The Congress was hosted by the European League Against Rheumatism (EULAR) and jointly organised with the Paediatric Rheumatology European Society (PReS). There were 14,500 attendees from 120 countries and the scientific programme included presentations from 4,900 abstracts submitted. Three Trustees attended the […]
Alain Cornet30 Years ago, on May 26, 2019, LUPUS EUROPE’s Constitution (then under the name of ELEF) was signed… The European Lupus Federation was born. as we celebrate this anniversary, we asked current and past Chairs to reflect on those years in support of People living with lupus in Europe. Yvonne Norton, Chair from 2002 […]
Alain Cornet“INTEGRATing patient reported outcomes, clinical data and quality indicators to physician drive data in clinical management of chronic rheumatic diseases: the paradigm of Systemic Lupus Erythematosus” You may recall a request from Lupus Europe, on behalf of the Integrate Project, to complete an on-line survey. Over 750 people completed the questionnaire which is a fabulous […]
Alain Cornetin only 2 days, the INTEGRATE and ERN ReCONNET surveys will be closed. Yet, we miss feedback from several countries, and only have 1 or 2 answers from others. It would really help our understanding of lupus and the interactions with Doctors if we had more answers from more locations. please help us gather that […]
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 CornetIn 1989, LUPUS EUROPE (then named ELEF)’s first convention took place near Brussels, in the historical city of Leuven. 29 years later, LUPUS EUROPE 2018 annual convention will once again take place in Leuven, and we are looking towards a record attendance with already 41 registrations confirmed. As the convention unfolds, we will make available […]
Alain CornetToday is the first day of the big European Rheumatology Congress, EULAR. The 2018 edition is being held in Amsterdam and will reunite thousands of delegates, mainly medical professionals. Eular is “a platform to facilitate interactions between patients, medical doctors, scientists, health professionals and professionals representing the pharmaceutical industry, both from within Europe and from […]
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 […]
📣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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