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And lots of activity ties in well with “Kick Lupus” of course 😉 For more information on Kick Lupus please read here.

There have been so many initiatives for World Lupus Day it’s difficult to name them all but here are a few that deserve to be highlighted.

The World Lupus Federation, of which LUPUS EUROPE is a founding member, has released an e-report and a press release entitled “Inactivity, Isolation and Impact on Daily Life are Top Concerns for People Living with Lupus.”

Our LUPUS EUROPE Vice-chair, Anne Charlet, has also been interviewed by Neovacs in France. Neovacs has released a press release for World Lupus Day. Together they have also created a series of four videos on various topics. One of the videos features Anne’s wonderful daughter who was kind enough to share her experience as a young lupus patient. The video links are below.

Testimonial – A young person living with lupus

What is lupus?

The role of patient organisations

The importance of clinical trials

And of course, watch out for our awareness campaign, running all this month on Facebook and twitter. Feel free to share (many of our members have also translated the campaign into other languages).

 

 

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2 days ago

♦️ Few days left to fill the survey!

✍🏻 Realiza la encuesta.

🔊 Comparte con tu comunidad.

🙏 Help us and Felupus ensure the Spanish population is represented

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3 days ago

🦋 It's #LupusAwarenessMonth❗

🦵 #KickLupus: make it visible

Take part in the Living With Lupus in 2024 survey.

🗣️Your insights are crucial for capturing the diverse experiences of those living with #lupus across Europe.

𝗞𝗲𝘆 𝗽𝗼𝗶𝗻𝘁𝘀 𝗼𝗳 𝘁𝗵𝗲 𝘀𝘂𝗿𝘃𝗲𝘆:

1️⃣ Confidential and brief: Your identity stays anonymous and takes only 15 minutes.
2️⃣ Personalized and relevant: The survey adapts to your unique situation and covers aspects pertinent to your life with lupus.

👨‍💻 We're gathering data to:

🔹 Understand the current landscape of lupus treatment and management in Europe.
🔹 Identify key areas for support and improvement.
🔹 Ensure that the voices of those living with lupus are heard.
🔹 Recognise the diverse needs and challenges faced by the lupus community.

🦋 This survey will dive into your unique experience on 🩺 diagnosis & symptoms, 💊 treatment & 👨‍👩‍👧‍👦 how lupus affects your daily activities and the strategies you employ to manage it.

🔄 Please 𝘀𝗵𝗮𝗿𝗲 𝘁𝗵𝗶𝘀 𝘀𝘂𝗿𝘃𝗲𝘆 with your community and on your social media.

Languages available:

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Association Lupus erythémateux Belgique Luupuse Selts / Lupus Estonia Организация на пациентите с ревматологични заболявания Σύνδεσμος Ρευματοπαθών Κύπρου ΣύΡεΚ Lupus Suomi ry Association Francaise du lupus et autres maladies auto-immunes AFL + LUPUS FRANCE Lupus Erythematodes SHG e.V. Ελληνική Εταιρεία Αντιρευματικού Αγώνα ΕΛ Ε ΑΝ Α Lupus Poland Lupus Klub Motýlik Reumatikerförbundet Lupus UK Felupus Associação de Doentes com Lúpus
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4 days ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍️ Responda à pesquisa e compartilhe com sua comunidade.

🙏 Help us & Associação de Doentes com Lúpus achieve more answers to ensure that the Portuguese population is represented in the results

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#LupusAwarenessMonth
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5 days ago

♦️ Few days left to fill the Living With Lupus in 2024 survey!

✍🏻Compila il sondaggio.

🔊Condividi con il tuo network.

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🙏 Help us and Gruppo LES Italiano ODV achieve more answers to ensure that the Italian population is represented in the results
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1 CommentComment on Facebook

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LUPUS EUROPE Uniting people with Lupus throughout Europe
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