The First Ever Interim Review Meeting

 

The 18th of September 2023 marked a significant milestone for Lupus Europe as the Lupus Europe Board and National Members from across Europe gathered virtually for the first-ever Interim Review Meeting. It was wonderful to see so many familiar faces on the screen! Everyone was united by a common purpose: working together towards a fulfilling life for all people with lupus in Europe, until we have reached a world without lupus.

National Member Spotlight

We were astonished by the passion and commitment of our National Members. It was a delight to hear about the incredible activities they are undertaking in their own countries and communities. Their dedication and the breadth of their work are truly inspiring.

The Purpose of Interim Review Meetings

The Interim Review Meeting is held annually, approximately six months after the Lupus Europe General Assembly. The Interim Review is one of the ways through which we work to ensure National Member Organisations are kept informed on the progress of Lupus Europe initiatives and that members actively participate in discussions on priorities and projects. It is also a great opportunity for the Lupus Europe community to come together to hear about the needs and the amazing work of its members. One of the focal points of the Interim Review Meeting was updating National Members on the progress of Lupus Europe initiatives in 2023 and discussing priorities for the upcoming year, 2024.

Perhaps the most powerful takeaway from the meeting was the sense of unity and solidarity among National Members. Their passion and dedication are a testament to the strength of the Lupus Europe Community.

We extend our heartfelt gratitude to everyone who participated in the Interim Review Meeting. Your presence and contributions were invaluable. Remember, our communication channels are always open. Whether you have questions, ideas, or simply want to connect, do not hesitate to reach out. Together, we are stronger, and together, we will continue to make a difference for people with lupus in Europe.

 

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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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