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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Today is rare disease day!

🚨 There are over 300 million people who live with a #raredisease in #europe.

🌎 Today, we join our fellow patient organisations that work towards a better life for people with rare diseases and their families.

🔴 Some facts about #rarediseases:

1️⃣ There are more than 6000 identified rare diseases.

2️⃣ Rare diseases currently affect 5% of the worldwide population.
The true impact of rare diseases is much wider, however, with those affected in Europe in the millions, as the disease affects not only the patient but also our loved ones.

3️⃣ 72% of genetic diseases are genetic, although #lupus is not one of them.
👉 Lupus is not a genetic disease. Although it is very much related to genes, there are other factors that play a role in its manifestation.

4️⃣ 👶Neonatal #lupus is a rare congenital disorder that some infants of mothers with lupus and anti-Ro/SSA and/or anti-La/SSB antibodies develop.
The most serious complication of neonatal lupus is a heart condition known as congenital heart block.

5️⃣ Having an early diagnosis is key to having access to the right treatment. This has an impact on physical and mental health and, therefore, on the quality of life.

Along with organisations like Rare Disease Day and EURORDIS-Rare Diseases Europe, we will carry on working towards an early diagnosis, access to treatment and equality for #raredisease patients 🙌.

Thank you for your support on this #rarediseaseday!

#ShareYourColours
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#lupus is a #raredisease that affects nearly 500,000 people in Europe. Furthermore, there are over 300 million people who live with a #raredisease in #europe.

Today, along with Rare Disease Day, patient organisations around the world advocate for equity for people living with a rare disease

#ShareYourColours and help us spread the word by liking and sharing. Remember that you can also download the material of the official campaign on the website

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#Lupus is a #RareDis

Today is #RareDiseaseDay!

And we have joined Rare Disease Day campaign.

Everyone deserves equal opportunities, access to healthcare ➕ early diagnosis, which is key to setting a treatment plan &, hence, achieving a good quality of life.
#ShareYourColours

www.youtube.com/watch?v=7J1oTfoIOGw
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Today is #RareDiseas

😃 Throwback to the HMA/EMA Multi-Stakeholder Workshop on Artificial Intelligence.

Watching Alain Cornet show the world what #LupusGPT really is still gives us goosebumps! 🙌

For those who still don't know this artificial intelligence tool:

💡 LupusGPT is built by patients and doctors.
🗣️ It speaks virtually any language.
💸 It’s free and anonymous- you don’t need to create an account.
📚 It is trained exclusively on a curated repository of validated documents.
🚫 It does not invent answers.

If something is not in the repository, LupusGPT will clearly say so. It will not guess. It will not generate false information.

🥹 Seeing LupusGPT presented at such a high-level regulatory forum confirmed something important:
Patient-led innovation can meaningfully contribute to the future of AI in medicine when it is built responsibly.

🔗 Try it here! lupusgpt.org/

🧠 Are medical terms confusing? Prefer shorter explanations in simple language?
Try #EasyLupus! The easy-read version of LupusGPT: easy.lupusgpt.org/
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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