We have a new page on the LUPUS EUROPE blog, in honour of an inspiring young man who has decided to run with and for LUPUS EUROPE. To follow his story each week simply click on the tab ‘Run with Andreas’.

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Week 0/24

Greatest life Challenge, till the next one!

 

A few months ago I ran my first half marathon – I had been in the sport for 5 months before I felt ready to do so. Lots of people may argue that it can be achieved sooner. I decided to take it slow and listen to my body before taking the challenge. Also, I forced myself to run for a cause – to keep me motivated – and dedicated it to my sisters who have been winning against unexpected events in their lives. I have to admit thinking of them during the race worked pretty well, especially in the last kilometers when my gastrocnemius muscles got so tight I could barely run.  But running a half marathon, I believe means you only get half the fun. So I decided to run a full one – 42,2km. Oh and also, why not do it at one of the most popular ones – the New York Marathon!

 

This coming November, 2016, I will be one of the 50,000 lucky ones who will be running through all five boroughs of New York City. I am also a Lupus patient – I was diagnosed in 2007 with symptoms of thrombosis and Raynaud’s syndrome.  Because of that, I would like to run for Lupus and I have joined forces with LUPUS EUROPE (NGO) which will be providing me with a space on its blog to communicate my training news up until I complete the marathon on 6th of November. You have probably guessed right, this will be my motivation in the last kilometres, when I may be experiencing paranoia and I won’t be able to feel my knees or muscles. It’s a win-win, right? Raise awareness and promote an active lifestyle for Lupus as well as get the motivation I need to complete the race 🙂

 

The idea is to share my weekly training plan and dedicate each week to one of the 24 member countries  of LUPUS EUROPE.  It will be a great opportunity to share my experience with each member country, if possible through a Video Call.

This week is dedicated to Denmark. 

“Remember that guy who gave up?  …Neither does anyone else.”

Andreas Panteli

Lupus Warrior

Disclaimer: The above awareness campaign is part of my volunteer work and has nothing to do with my professional activities.

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🇨🇭 Spotlight on Lupus Switzerland!

At our #lupusconvention, Lupus Switzerland presented a powerful poster showing the cover of their latest magazine, highlighting their commitment to diversity and inclusion within the lupus community.

🧑‍🤝‍🧑 Although around 9% of their members are men, this was the first time in more than ten years and 22 issues that the topic had been addressed. A meaningful step towards ensuring everyone feels seen and represented.

🖨️ With more than 600 copies printed and distributed, this initiative helps raise awareness, challenge assumptions and promote inclusion across their community.

👏 Congratulations to Lupus Switzerland!
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🚨 Have you ever felt that your symptoms or treatment needs were taken less seriously because of your body size?

😪 For many patients, discussions about symptoms, pain, or treatment options are overshadowed by weight. Medication side effects, inflammation, fatigue, and reduced mobility are often ignored, while responsibility is placed on the individual. This can have real consequences for clinical decisions, referrals, and quality of care.

🌈 We are extremely proud of our Chair, Jeanette Andersen, for addressing this reality in her article “More Than a Number: Weight Bias in Rheumatology Care”, published in the special #EMEUNEWS issue on #Obesity and #RheumaticDiseases.

Thank you, Anastasia Madenidou and EMEUNET, for giving space to this important perspective and for inviting Jeanette to contribute.

Read the full article here: emeunews.org/2025/12/10/more-than-a-number-weight-bias-in-rheumatology-care/
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🚨 Have you ever f

📌 Reminder for our Youth Group Webinar!

🚫 Alcohol, recreational drugs & lupus: what are the risks?
🌟 What young people living with lupus need to know to protect their health.

Lupus Europe’s Youth Group invites you to an open, evidence-based discussion with Dr Luca Moroni focused on how alcohol and recreational substances can interact with lupus, treatments, and long-term health.

We will talk clearly about:

🚨 Known risks and current uncertainties
🚨 Interactions with lupus treatments
🚨 Real-life situations often left out of the conversation

😱 Why talk about this?

Because young people sometimes make choices that can carry real health risks, and they don’t always feel able to tell their loved ones or doctors everything.

‼️ Alcohol and recreational substances are part of many social environments. When lupus is involved, lack of reliable information can increase risks.

💁‍♀️ Talking about this before helps:

•⁠ ⁠Reduce avoidable risks.
•⁠ ⁠Encourage safe and informed decisions.
•⁠ ⁠Create a safe space for questions that are often left unasked.

🌈 That’s why this webinar exists: to anticipate real situations, NOT encourage them, and provide clear, evidence-based information for young people living with lupus.

🗓 29 January 2026
⏰ 19:00 CET
💻 Online

📩 Register now by emailing secretariat@lupus-europe.org

⏳ There’s still time to join!
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📌 Reminder for ou

🇳🇴 Spotlight on Lupus Norway!

At our #LupusConvention, Lupus Norway shared how they continue to support people living with lupus through information, education and strong collaboration with healthcare professionals.

🏥 Every year, the University Hospital in Oslo organises a meeting for patients with connective tissue diseases, including lupus. Lupus Norwa has an information stand that offers reliable resources and answers questions from anyone interested in SLE.

📘 They have also published two new brochures to help patients better understand and manage life with lupus.:
“Practical tips for improving your daily life” and “Find out more about SLE”.

📰 To keep their community informed, Lupus Norway publishes a newsletter twice a year, focusing on key lupus-related topics such as research projects, sun protection, and patient stories. They also share updates about their participation in conferences and meetings, including EULAR, helping members stay up to date and engaged.

👏 Congratulations, and thank you, Lupus Norway, for your commitment. You are a great example of how patient organisations can make a difference
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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