Youth Group Meet Up

Lupus Europe Youth Group Meet Up

Lupus Europe is organising a Meet Up of its Youth Group.

There are a few spots available for new members to join:

  • Do you have lupus?
  • Do you live in geographical Europe?
  • Are you between 18-35 years old?
  • Do you want to connect with other young people with lupus?
  • Are you interested in volunteering?

Send us an e-mail and be selected to join other young people from all around Europe at an exciting meet up! You will have the opportunity to exchange ideas, make new friends and have some fun!

The Lupus Europe Youth Group is made for young people with lupus by young people with lupus. No outsiders, just us. The meet up will be held in Barcelona from Friday, February 3rd in the evening until Sunday, February 5th around lunch time. All costs (travel and stay) will be paid by LUPUS EUROPE. The language will be English, but don’t worry, most participants are not native speakers!

Please apply as soon as possible by sending an email to zoe@lupus-europe.org

 

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Zoe Karakikla-Mitsakou

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    LUPUS EUROPE
    2 weeks ago
    LUPUS EUROPE

    🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood.

    ✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲.

    🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition.

    🤔 So, how can we #kicklupus with prevention?     ... See MoreSee Less

    🦋 Lupus is a complex autoimmune disease, and its exact cause is not fully understood. ✋ While various risk factors have been identified, such as genetic predisposition🧬 and exposure to certain environmental🌇 triggers, 𝗹𝘂𝗽𝘂𝘀 𝗺𝗮𝘆 𝗻𝗼𝘁 𝗯𝗲 𝗲𝗻𝘁𝗶𝗿𝗲𝗹𝘆 𝗽𝗿𝗲𝘃𝗲𝗻𝘁𝗮𝗯𝗹𝗲. 🔍 Understanding and managing these risk factors, along with early detection and appropriate medical care, are essential in effectively addressing #lupus and improving the quality of life for individuals affected by this condition. 🤔 So, how can we #KickLupus with prevention?Image attachmentImage attachment
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    LUPUS EUROPE
    4 weeks ago
    LUPUS EUROPE

    🌟 Calling all Lupus Patient Organisation Volunteers! 🌟

    🗣️ Your Voice Matters!

    We want to hear from YOU!

    ❓ Are you a volunteer for a lupus patient organisation?

    Your insights are invaluable! 💎

    Participate in our quick survey, taking just 2-3 minutes of your time, and help us understand volunteer motivations better.

    Your feedback will help shape the future and help us understand what we should work on to make our volunteers happier and more motivated.

    ✍️ You can answer in English or in your own language.

    Ready to share your thoughts?

    🔗 Click the link below and let your voice be heard!

    s.surveylegend.com/-NfBafeCoorOLsOkK1Du

    🤗 Thank you for reading this post and considering answering the survey!

    Together, we can make a huge difference! 💪     ... See MoreSee Less

    Play2023.11.01_Survey volunteers.mp4
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    🤷‍♂️

    LUPUS EUROPE
    4 weeks ago
    LUPUS EUROPE

    📆 New month, new challenge!

    🍁 As the calendar flips to November, our #kicklupus campaign has a new theme!

    🤔 Can you guess what this month's theme is all about?

    💡 Hint: It's all about implementing measures to help us hold #lupus at bay!

    🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus.

    Ready to embark on this journey with us? 💪     ... See MoreSee Less

    📆 New month, new challenge! 🍁 As the calendar flips to November, our #KickLupus campaign has a new theme! 🤔 Can you guess what this months theme is all about? 💡 Hint: Its all about implementing measures to help us hold #lupus at bay! 🙌 Stay tuned for a month of discovery and empowerment as we unveil the importance of these measures in managing lupus. Ready to embark on this journey with us? 💪
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    💪🏻🍀

    LUPUS EUROPE
    1 month ago
    LUPUS EUROPE

    ‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to:

    🔹Fear
    🔹Lack of trust
    🔹Feeling of unsafety
    🔹Belief in good health
    🔹Lack of recommendations by doctor

    💡Let's #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus.

    𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares

    One of the most common fears among #lupus patients is the possibility of vaccines causing a flare.

    ✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks.

    𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines

    ✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important.

    Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE.

    𝐌𝐲𝐭𝐡 3️⃣: Lupus patients can't receive live vaccines

    ✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines.

    It is crucial this is assessed on a case-by-case basis by your doctor.

    𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms

    ✅ Vaccines don't worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients.

    𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission

    ✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease.

    For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis.

    𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life

    ✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history.

    Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you

    🌏 Help us #KickLupus by raising awareness of the importance of immunisation.

    Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases:

    ard.bmj.com/content/79/1/39     ... See MoreSee Less

    ‼️Despite a higher risk of infection in #SLE patients, vaccination rates are low due to: 🔹Fear 🔹Lack of trust 🔹Feeling of unsafety 🔹Belief in good health 🔹Lack of recommendations by doctor 💡Lets #KickLupus by shedding light on the facts & debunking the misconceptions surrounding vaccinations for people with lupus. 𝐌𝐲𝐭𝐡 1️⃣: Vaccines & lupus flares One of the most common fears among #lupus patients is the possibility of vaccines causing a flare. ✅ Prof. Arnaud states that the risk of flare after vaccination is not confirmed. Typically the benefits of vaccination outweigh any potential, small risks. 𝐌𝐲𝐭𝐡 2️⃣: People with lupus should avoid all vaccines ✅ While some vaccines may not be recommended for people with lupus, many vaccines are safe and important. Protecting against infections is key, as even minor illnesses could lead to complications in individuals with SLE. 𝐌𝐲𝐭𝐡 3️⃣: Lupus patients cant receive live vaccines ✅ Live vaccines are not typically recommended for lupus patients. However, in certain circumstances, it may be appropriate for some people to get live vaccines. It is crucial this is assessed on a case-by-case basis by your doctor. 𝐌𝐲𝐭𝐡 4️⃣: Vaccines worsen lupus symptoms ✅ Vaccines dont worsen lupus symptoms. In fact, they help protect against infections, which could be more severe in lupus patients. 𝐌𝐲𝐭𝐡 5️⃣: Lupus patients should only get vaccines if they are in remission ✅ According to EULAR recommendations, vaccination in patients with lupus should preferably be administered during quiescent disease. For patients with active disease, immunisation should not be ruled out & should be assessed on an individual basis. 𝐌𝐲𝐭𝐡 6️⃣: One dose of the vaccine covers you for life ✅ If you have lupus, your doctor should assess your vaccination status every year. That ensures vaccination strategies continue to be aligned with your needs & medical history. Always consult with your doctor. They will tell you which vaccination schedule is safe & effective for you 🌏 Help us #KickLupus by raising awareness of the importance of immunisation. Check the EULAR recommendations for vaccination in adult patients with autoimmune inflammatory rheumatic diseases: https://ard.bmj.com/content/79/1/39Image attachmentImage attachment+6Image attachment
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    LUPUS EUROPE Uniting people with Lupus throughout Europe
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