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This is good news and follows on from the IAPO/Synergist organised side event at the World Health Assembly last monday

Reflecting on one of the best quotes from IAPO-The Synergist #WHA side-event last month: lived experience "is not the cherry on the cake; it's the flour in the bread" - Dr Antoine Boivin 🫶 Too much content to condense into X - more details here: linkedin.com/posts/amanda-b…

Wishing the European RBD community an enriching #EHCLC2024 #EHCLeadershipConference this weekend! 💪

Wise, wonderful & so very true: nothing is effortless - it takes grit - fully commit to every point with intensity, clarity and focus, then leave it behind you - try everything - and be kind to one another 🫶 full talk here: youtu.be/pqWUuYTcG-o?si…

To all friends and those who sometimes have darker thoughts: stay with us and cause hurricanes ❤️🙏

This video by Simon Sinek hit me hard. Positions of leadership are rented, not owned.

Looking as dapper & energetic as always! Have a great #ISTH Brian O Mahony Michael Makris

BMJ editorial on importance of social participation in health I'm honoured to have co-authored it w/ esteemed friends. Real credit goes to ALL those who brought this WHO resolution to life. Let's all ensure we do our parts to get it fully implemented! 🙏💪bmj.com/content/386/bm…

⁦European Patients' Forum⁩ ⁦The European Public Health Alliance (EPHA)⁩ Amanda Bok ⁦EUPATI⁩

This week Investigate Europe published the article “Drug firms finance Europe’s patient groups with multi-million donations” see below. It’s not the first article of this kind that I’ve seen. But I hope it’s the last. Here my thread on why 👉1/9

Not because the pharmaceutical industry will lessen support for patient groups (that should not be the conclusion readers draw from this). But because the public sector will increase it. 👉2/9

What patient groups bring is far beyond the community support and increased access mentioned in this article. When properly enabled, they add significant value to entire health systems. By partnering from health literacy to diagnosis. 👉3/9

From access to treatment and health services, yes, but also to high-quality self-care, adherence, and safety monitoring. People with lived experience are important health (re-)calibrators. They help orient health systems around the outcomes that actually matter. 👉4/9

In this way they are crucial drivers of health system efficiencies, effectiveness, and yes: cost savings. What’s more: world leaders agree. 👉5/9

Six months ago they unanimously committed to “allocating adequate and sustainable public sector resources in support of effective social participation” for “health-related decisions across the system” - who.int/news/item/29-0… 👉 6/9

Now, regions and countries around the world are starting to discuss how they’re going to do it. Already next week at the GasteinForum. Yes, we can talk about more harmonised transparency reporting - certainly. 👉7/9

And we can also talk about centralized pots of private funding - definitely. But at the end of the day the question is not what value corporations should or shouldn’t expect to get from their funding choices. The question is what value society should get from its taxes. 👉8/9

So: can we now start having THAT conversation? Join the global patient movement catalyst here: precisionmedicine.synapseconnect.org/initiatives/gl… & help us partner globally on social participation 💪 The Synergist Nicholas Brooke European Patients' Forum EHC_Haemophilia EFPIA UHC2030 CSEM (UHC2030 Civil Society Engagement Mechanism) IAPO World Health Organization (WHO) 👉9/9

Arrived at #EHFG2024 & so excited to be here & to learn, grow & action impact together - especially on #socialparticipation & "why it makes health systems more efficient"👇👇👇