LUPUS EUROPE is delighted to invite you to participate to its Kick lupus 2018 “Word Cloud” contest (*)Billede1

There are so many ways to Kick Lupus a little (or a lot) further away!

 

 

Billede2This year, the “Kick Lupus Workgroup” came up with a motto: “Kick Lupus – Pushing the limits to reach a better quality of life”. This connects very well to our next convention theme which will be “restoring hope”.

 

We invite all people living with lupus in Europe, their family and friends to participate:

For YOU, what is “Kick lupus?”

Build a word cloud that expresses what “Kick Lupus” means to you, and how you can “Kick Lupus” every day…Billede3

 

and send it to kirsi@lupus-europe.orgby September 1, 2018.

The best word clouds will be displayed on our website, and the winner will be invited to present its word cloud to the LUPUS EUROPE Convention end November 2018.

(*) Some important details:

– A word cloud is a way to assemble key words of relevance to the topic, using different sizes and colors to draw attention to the respective importance of each of them. Words assembled can then form a cloud shape… or any other attractive shape. You can find (free) word-cloud apps on internet, or draw them by hand and scan them.Billede4

– Submissions will be evaluated by a Jury appointed by LUPUS EUROPE Board, giving an important consideration to the content of the cloud, rather than merely the artistic appearance.

– Submissions will be received from today until 1st September 2018

– By sending your word cloud, participants agree to its use and publication by LUPUS EUROPE without payment of copyright.

– Word clouds can be made in any European language. However, we ask to please provide us with a translation of the words used (which can just be a list on a separate sheet) to help the Jury assess fairly the word content.

For more information, contact Kirsi@lupus-europe.org  or the secretariat@lupus-europe.org

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🇸🇪 Spotlight on Lupus Sweden!

💜 At our #LupusConvention, Riksföreningen för SLE (Lupus Sweden) shared their inspiring work to raise awareness, spread knowledge and build connections across the lupus community in Sweden.

💬 Formed in 2017 as part of the Swedish Rheumatism Organisation, they now count almost 160 members. Their mission: to spread knowledge about lupus and counteract loneliness.

📘 One of their most beautiful achievements in 2024 has been the release of a children’s book, “My mother can have a butterfly on the nose”, written to help younger children understand what it’s like to live with a parent who has lupus.

🌸 Every May, they celebrate World Lupus Day with a national theme day, a tradition started in 2013! Each year, the event takes place in a different city so that all members across Sweden can feel included and represented.

🦋 Recently, they also launched a new lupus/SLE awareness pin, raising funds for lupus research and making lupus more visible to the public.

👏 Thank you, Lupus Sweden, for your dedication, creativity and compassion. A great example of how patient organisations bring people together and make lupus visible!
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📢 Calling all #lupus patients!

🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with #SLE presents unique challenges that need to be addressed.

✍️ That is why we invite you to participate in the #RareBarometer survey by EURORDIS-Rare Diseases Europe.

Your insights can make a difference and help shape future policies that support people living with this condition.

🙏 Thanks for sharing your experience!

www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
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📢 Calling all #lu

📣 LupusGPT was featured at the European Patients’ Forum (EPF) Congress in Brussels!

The EPF Congress is the largest European event dedicated to strengthening patient involvement in healthcare systems, policy and research. It brings together leading voices from the European patient community and cross-sector experts to build more resilient, inclusive and patient-centric healthcare across Europe.

💜 This year, our #LupusGPT poster was present thanks to the work of our Chair, Jeanette Andersen, and the support of Cathrine Hjelmeset from Lupus Norway and the Lupus Europe PAN, who represented us in Brussels. We are deeply grateful for their commitment.

🙏 We would also like to express our sincere gratitude to the EPF team for their remarkable support throughout the process. Their dedication ensured that LupusGPT was fully represented at the Congress, and we truly appreciate their efforts.

🧡 LupusGPT is built by patients to provide clear, accessible and reliable information, collaboratively validated by doctors and patients, about lupus in almost any language.

Try it now: lupusgpt.org/
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🟣 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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LUPUS EUROPE Uniting people with Lupus throughout Europe
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