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On Jan 20th, in Paris, the Organization for Economic Co-operation and Development (OECD) held a Forum on the Future of Health, with the tag line of “People at the Center”.  The Organization provides a setting where governments can compare policy experiences, seek answers to common problems, identify good practice and coordinate domestic and international policies.  Generally, the OECD is associated with business, trade unions, developing economies, so it was a very pleasant surprise to see the huge commitment the OECD made to patients and world health with this Forum.

“Over 500 participants representing civil society, patients, providers, policy makers, academics and industry came together to discuss key issues including: Harnessing digital technology and data to create proactive, people-centred systems; Caring for people with complex needs; The importance of measuring what matters to people and to patients.”

The speakers were from all around the globe, including health ministers, economists, …, and a few patient representatives.   It was a two-day meeting: the first day open to patient representatives.

Thanks to an invitation issued during an EPF conference on Patient Safety, LUPUS EUROPE was able to attend and was represented by Anne Charlet who went to listen and to learn, to meet and to tweet! Here is her report – previously published in our recent newsletter:

AnneIt was a full day of very high quality presentations and relevant questions and answer sessions.

My first impression was one of surprise as I slowly realized that absolutely every single talk had a patient-centric message:  Ask the patient, involve the patient, get patient reported outcomes, “doctors have to get off their pedestals and patients off their knees”!

The presentation that impressed me most was by Michael Porter, an economist and professor at the Harvard Business School.  He is not in favor of an incremental approach to developing and using patient reported indicators.  “The only definition of a successful health system is one that produces value for patients. We must establish global standard sets of outcomes, condition by condition. There is no excuse for inaction,” he said.

His economist’s approach, quantifying something that we often view as only qualitative, was fascinating.  He is a founder of the ICHOM project, which has as a goal to standardize outcome measures for key medical conditions, and thereby being able to truly show “success rates”.  I learned at this forum that they are just starting work on their first auto-immune disorder: Rheumatoid Arthritis.  For the moment, lupus is not in their plans, and as they are a non-profit organization and accept no funding from industry, they need to have a project funded first before they start work.  Something for the future?

There were many more excellent presentations.  The few patient representatives that were present seemed to be doing a lot of the tweeting, including myself: if you search on #Futureofhealth, you can read the tweets that went out over those days.

And to read a very good account of the day, look at Tessa Richards: Power to the people—via Paris Tessa Richards, British Medical Journal, blog entry here: http://blogs.bmj.com/bmj/2017/01/20/tessa-richards-power-to-the-people-via-paris/

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❤️‍🔥 Something big is coming...

... this #WorldLupusDay 🌍.

#makeitcount
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📣 Register now by sending an email to secretariat@lupus-europe.org, and don't miss our Youth Group Webinar!

❞𝗙𝗲𝗿𝘁𝗶𝗹𝗶𝘁𝘆 𝗮𝗻𝗱 𝗳𝗮𝗺𝗶𝗹𝘆 𝗽𝗹𝗮𝗻𝗻𝗶𝗻𝗴 𝗳𝗼𝗿 𝘆𝗼𝘂𝗻𝗴 𝗽𝗲𝗼𝗽𝗹𝗲 𝘄𝗶𝘁𝗵 𝗹𝘂𝗽𝘂𝘀❞

🌟 What should young people know? What questions do young people have?
🌟 Key information to support informed decisions and future planning

🖥️ In this online webinar, Lupus Europe’s Youth Group will host an open, evidence-based discussion with Prof. Laura Andreoli on lupus, lupus treatments, fertility, pregnancy planning, and reproductive health in young people.

The session will address real questions from young lupus patients, providing clear, practical information to support communication and decision-making between patients and healthcare professionals.

🗣️ Moderated by Jeanette Andersen

Save the date!

🗓️ May 10, 2026
⏰ 19:00 CET (i. e. Paris time)
💻 Zoom
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📣 Register now by

💧 You’ve probably heard about “liquid biopsy”, a promising concept in lupus research.

But do you actually know what it means?
And why is everyone talking about it?

🤔 Could it help detect lupus nephritis and keep track of how it evolves using less invasive methods?

In this short video from our #ELM2026 series, Dr Andrea Fava breaks it down in a clear and patient-friendly way.

🎥 Watch the video and find out!

youtu.be/GnRbBK7x5hs?si=DzGfLGNW0tp_UMn-

🚨 Don't miss out and visit the #ELM2026 playlist with all videos in the "Video on Demand" section of our website! www.lupus-europe.org/videos-on-demand/

🙏 Thank you, Dr Andrea Fava, for your generosity in taking the time to share your knowledge in such a clear and accessible way, helping bring complex medical information closer to people living with lupus.
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💧 You’ve probab

📅 𝗠𝗮𝗿𝗸 𝘆𝗼𝘂𝗿 𝗰𝗮𝗹𝗲𝗻𝗱𝗮𝗿❗

🤩 Lupus Europe is excited to invite you to a unique event on World Lupus Day:

🧑‍💻 “Fertility, family planning for young lupus patients”

🚀 𝗔 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝗼𝗿𝗴𝗮𝗻𝗶𝘀𝗲𝗱 𝗮𝗻𝗱 𝗹𝗲𝗱 𝗯𝘆 the Lupus Europe 𝗬𝗼𝘂𝘁𝗵 𝗚𝗿𝗼𝘂𝗽.

📆 10th of May.
🕖 19:00 h CET.

🙌 A space dedicated to discussing issues that impact young people, by young and for young people.

This event is a tremendous opportunity to connect, learn, and share experiences related to lupus from the perspective of young people.

👩‍⚕️ Joining us will be Prof Laura Andreoli, who will answer your questions and engage in meaningful conversation with Lynette, Makya, Marina and Rita from the Lupus Europe Youth Group.

Moderated by our Chair, Jeanette Andersen.

‼️Register now by sending an e-mail to secretariat@lupus-europe.org‼️
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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