Lupus Europe is set to mark World Lupus Day with a webinar aimed specifically at young people living with lupus. The webinar, “Lupus and Youth: A Dialogue between the Lupus Europe Youth Group and a Young Rheumatologist,” is scheduled for the 10th of May at 19:00 CET.

Why This Webinar Matters

 

Lupus frequently affects people during their prime years. Openly discussing and addressing the unique challenges faced by young people with lupus is crucial for enhancing their quality of life and understanding of their condition. Lupus Europe recognises this need and is bringing the Lupus Europe Youth Group and a Young Rheumatologist together to foster a supportive dialogue.

 

What to Expect

 

The webinar will be led by the vibrant and knowledgeable Dr. Francesca Crisafulli from Italy. Co-leading the webinar will be members of the Lupus Europe Youth Group. Dr. Crisafulli, a young rheumatologist and lupologist, will offer her expert insights into the disease and answer questions from participants. This format encourages open communication between young lupus patients and the specialist. It also allows attendees to gain a deeper understanding of young peoples’ concerns and experiences.

 

Engaging Young Voices

 

Lupus Europe’s is committed to involving youth people in conversations around lupus. By dedicating this webinar to young voices, led by young voices, the specific concerns and perspectives of younger patients can be heard in their own voice. This is an event where young people with lupus can freely express their concerns, share their experiences, and openly discuss solutions with both peers and professionals.

 

How to Participate

 

Don’t miss the opportunity to participate! Register by sending an email to secretariat@lupus-europe.org. The webinar will be highly interactive. Participants will have the opportunity to engage directly with the Youth Group and the rheumatologist!

 

Final Thoughts

 

This webinar is not just an event, but a bridge connecting young lupus patients with experts. It is a rare chance to interact, ask important questions, and connect with others who understand the challenges of living with lupus as a young person.

 

Don’t miss out on this opportunity to be part of a meaningful conversation. Mark your calendar for May 10! Take the first step towards engaging with a community of young people committed to supporting other young people with lupus.

 

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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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