This past year has been very difficult for so many people around the globe. But positives can often be found even in crises and difficult circumstances! Finding the positives and holding onto them is the spirit of Kick Lupus!

 

With that in mind, we want to announce the Kick Lupus 2021 Competition, My Covid19 Lupus Hero!

 

Is there a special person whose support for you really shone through this past year, through the covid19 crisis? Did someone make life easier for you in a practical way? Was there someone you could always rely on to provide emotional support during this crisis?

 

The Covid19 Lupus Hero Competition 2021 is your chance to nominate that special person for a Covid19 Lupus Hero Award!

 

A Covid19 Lupus Hero may be your neighbour who has been going shopping for you during the pandemic, it might be someone in your lupus clinic who has made you feel safe when you’ve had to go in for reviews or treatment or it might be a friend who has been diligent about keeping in touch in various ways throughout the year, even though you couldn’t meet in person. Who is your Covid19 Lupus Hero?

 

To enter the Covid19 Lupus Hero 2021 Competition you have to send us a nomination.

 

 

Let us know about your hero! You can do this in the format of your choice, whether that is a 30 to 60 second video, a short e-mail, an essay of a few paragraphs, a drawing with a short text, a cartoon or any kind of format you choose!

 

To take part you have to meet the following conditions:

 

  • Be a lupus patient living in Europe
  • You must make the submission yourself, in whatever format you choose
  • You must have the approval of the person you are nominating to share their information with us

 

The prize is:  The winner of this competition and their Covid19 Lupus Hero will both be invited to the Lupus Europe 2021 Convention which we hope will be in Bratislava!

Please send all submissions to: zoe@lupus-europe.org

 

The deadline for the submission is: June 30, 2021

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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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