Lupus Europe Webinars

Watch this Lupus Europe Youth Group webinar on Alcohol, Drugs, and Lupus: A Dialogue with a Young Rheumatologist. Explore this topic as the Lupus Europe Youth Group, Lupus Europe Chair Jeanette Andersen and Dr. Luca Moroni delve into an honest, fact-based discussion about a potentially relevant topic for some lupus patients.

Alcohol, Drugs, and Lupus

European Lupus Meeting 2024

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2nd Patient Panel on Youth

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European Lupus Meeting 2022

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Volunteer Testimonials

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Lupus Europe Convention in the Clouds 2021

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Lupus Europe Convention in the Clouds 2020

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EXERCISE PROGRAM for Lupus Patients

Lupus Europe • EXERCISE PROGRAM for Lupus Patients • INTRO
LUPUS EUROPE • EXERCISE PROGRAM for LUPUS PATIENTS In collaboration with trained physical therapists Lupus Europe has developed an exercise program in five levels which has been endorsed by leading European Lupologists. Studies show, that the only thing, that is clinically proven to help lupus fatigue is “moderate” exercise. We as lupus patients ourselves do however realise, how difficult it can be to start exercising, when you feel fatigue! This is why we developed this program from our own experiences. Exercise doesn´t necessarily mean, that you have to run a marathon or go to the gym. With this program we want to show, that you can do it no matter where you are and how you are feeling. You should be able to find a level that suits you each day. The goal is of course to increase in level whenever you can, but you will probably experience, that you have to go down a level at some point. Don´t despair, this is quite normal, and the most important thing is, that you do one exercise a day – not which level it is. Who knows - you might even feel so energized by doing one program, that you can take on the next level straight away…? All exercises can be done without training tools and in the individual videos we will guide you through the various options for increased or reduced difficulties. Each program can be done in 15-20 minutes, if you do two or three rounds.
Lupus Europe • EXERCISE PROGRAM for Lupus Patients • LEVEL #1
Jan 28, 2020
Lupus Europe • EXERCISE PROGRAM for Lupus Patients • LEVEL #2
Jan 28, 2020
Lupus Europe • EXERCISE PROGRAM for Lupus Patients • LEVEL #3
Jan 28, 2020
Lupus Europe • EXERCISE PROGRAM for Lupus Patients • LEVEL #4
Jan 28, 2020
Lupus Europe • EXERCISE PROGRAM for Lupus Patients • LEVEL #5
Jan 28, 2020
KICK LUPUS 2019 • Winner • Andrealara's Video

Kick Lupus

Lupus makes you understand which are the moments you can be happy and makes you enjoy these moments more than anyone else could ever do, because nobody can understand what it means to renounce something because your body can’t make it, and this is why we “fully live all our
experiences”.

Lupus Europe ANSWERS

MY LIFE with Lupus Europe

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Lupus Europe STRATEGIES

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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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