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 David Kříž from the Lupus Group of Revma Liga Česká Republika, who talked […]
Zoe Karakikla-MitsakouMy name is Melina and I live in the easternmost, warmest, and sunniest part of Europe, the small island of Cyprus. I have lived with lupus for the last 21 years, most of my life, if you count that I am 37 years old. I have also made a dream come true and I want […]
Zoe Karakikla-MitsakouLupus Europe is set to mark World Lupus Day with a webinar aimed specifically at young people living with lupus. The webinar, “Lupus and Youth: A Dialogue between the Lupus Europe Youth Group and a Young Rheumatologist,” is scheduled for the 10th of May at 19:00 CET. Why This Webinar Matters Lupus frequently affects […]
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 Viola Zajk from Lupus Poland, who talked to us about the incredible work […]
Zoe Karakikla-MitsakouFebruary 29th 2024 is Rare Disease Day. Lupus is a condition that is classified as rare in Europe. While it remains rare in numbers, lupus is all too familiar to those it affects. Living with lupus often means navigating a world that is not designed with rare diseases in mind. The challenges faced by […]
Zoe Karakikla-MitsakouLupus Europe is proud to announce a significant milestone in the representation of people with skin lupus. Annemarie Sluijmers, Vice Chair and Secretary of Lupus Europe has taken an important step by becoming an ePAG (European Patient Advocacy Group) Patient Advocate of ERN Skin.Annemarie became an ePAG in July 2023. Her recent attendance at the […]
Zoe Karakikla-MitsakouZoe Karakikla-MitsakouEvery year, the EULAR Congress stands as a beacon of knowledge, bringing together over 12,000 delegates, including rheumatologists, healthcare professionals, and patients from all walks of life. This year, I had the privilege of being a part of this grand event in the vibrant city of Milan. As a member of the Lupus Europe Patient […]
Zoe Karakikla-MitsakouJoin us for an insightful webinar on Tuesday, December 5th at 19:00 CET, as we present a balanced examination of CAR-T cell therapy in the context of lupus. We are honoured to host Professor Ed Vital, who will share his expertise on both the possible opportunities and challenges of this innovative treatment. In this webinar, […]
Zoe Karakikla-MitsakouHello! My name is Ida, and I’m here to share my incredible journey through the EUPATI Open Classroom, an initiative by the European Patients’ Academy of Therapeutic Innovation (EUPATI). For me, EUPATI training was a ride filled with challenges, dedication, and a newfound understanding of the medical world. Let me be honest; diving into […]
📣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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