Lupus Europe is organising a Patient Panel for Men this autumn and there are a few remaining spots available for those who want to apply!

📍 Where: Leuven, Belgium
📅 When: (Arrival) Friday 31 October in the afternoon – Sunday 2 November 2025 (departure after lunch)
👥 Who is organising: Lupus Europe. The Panel will be animated by Andreas Panteli (Lupus Suisse) & Ricky Chotai (Lupus Europe)

Much remains to be discovered about lupus. Not just disease mechanisms or new treatments, but also a better understanding of what it means to live with lupus, the day to day realities faced by patients, the impact on social and psychological functioning. To help people living with lupus bring their life experience to the table, Lupus Europe created Patient Panels, by and for people with lupus. The panels bring together 10-15 persons living with lupus from all over Europe to discuss a topic of interest. Discussions are animated by People living with lupus themselves, creating a unique atmosphere in the group, and allowing to speak in full confidence, without anyone else in the room. Participants can simply be themselves and speak in their voice.

Who can apply:

  • Any man living with lupus in Europe
  • Can speak conversational English (doesn’t need to be perfect)
  • Want to meet other men

What we provide:

  • All reasonable travel and hotel costs paid by Lupus Europe
  • Sessions made by men with lupus, for men with lupus
  • Time to ask questions
  • Chance to make friends and get support

How to apply:

 

Apply now! Don’t delay!

 

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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!

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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

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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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