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Reposted by Simon Stones

PxP (For Patients, By Patients) @pxphub.bsky.social · Jul 24

PxP Steering Committee Member Simon Stones shares a quote on the importance of patient partner leadership and why they should be at the forefront of initiatives like PxP.

Learn more about PxP 2025 here:
pxphub.org/event/

#PxP25 #PatientEngagement

I'm honoured to serve on the international steering committee for the PxP Conference 2025, a virtual global event championing the leadership of patient experts in healthcare transformation. The time has come to unleash the full power of lived experience... patients are no longer passive participants, but active drivers of research and care that truly reflect the needs of our diverse society. This is the democratisation of healthcare: bold, inclusive, and guided by those with the deepest expertise - people living with health conditions every day. Together, we're redefining what meaningful, equitable, and person-led health systems look like."

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Simon Stones @simonrstones.bsky.social · Jun 27

The fabulous @lynnlaidlaw.bsky.social showcasing how patient-led research is possible! The system forces people to choose their silo, which is crazy - time to move towards an expertise and interest-led model I say!

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Simon Stones @simonrstones.bsky.social · Jun 27

Delighted to be at the British Society for Rheumatology ‘Patient Voices in Rheumatology’ conference in London! #rheumatology

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Brain Health Mission @brainhealthmission.org · Jun 21

You’ve already had a sneak peek at what’s happening at this year’s Brain Health & Sustainability booth — now it’s your turn to get involved! 🧠🪴

Collect stamps on your Brain Health Bingo card for a chance to win a prize!

#BrainHealthMission #ean2025 #Neurology @EANeurology

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Simon Stones @simonrstones.bsky.social · Jun 21

Excited to be in Helsinki for the next few days at @ean.org #ean2025! Please say hello if you’re attending!

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The European Alliance of Associations for Rheumatology @eular.org · Jun 17

🙌Thank you for attending the #EULAR2025 Congress!
We hope you had a memorable experience!

📺Access the On-demand Congress Platform until 31 December 2025 👉 https://pulse.ly/vl0sg17x4k

✈️We Look forward to seeing you at #EULAR2026 in London!

#EULAR #EULAR2025 #Rheumatology

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Lupus Europe @lupuseurope.bsky.social · Jun 17

🦋Impossible to summarise all #EULAR2025 has meant for us.

While we prepare more content to share scientific highlights, here’s a short video with some special, human moments.

From this energy & passion come projects like #LupusGPT

🙏 Thanks to all who make all this possible

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Simon Stones @simonrstones.bsky.social · Jun 14

Best picture of the entire Congress 🤣 #eular2025

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Thomas Davergne @thomasdavergne.bsky.social · Jun 14

💥 The 3 “Move Together” sessions were a great success at #EULAR2025!
Hands-on, inclusive, and packed with practical tools to bring exercise science into daily care for people with RMDs.
A huge thank you to all who joined us!
posted by thomasdavergne.bsky.social

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Silvia Aguilera @silvia-aps.bsky.social · Jun 14

#EULAR2025 #PARE #Highlights: Fishbowl session - From exclusion to empowerment: Engaging marginalised groups, chaired beautifully by @simonrstones.bsky.social

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Lupus Europe @lupuseurope.bsky.social · Jun 14

😃 #LupusGPT has been highlighted once again at @eular_org PARE Highlights session, recognising its value as a patient-driven, multilingual tool that makes reliable lupus info accessible worldwide.

A great example of how co-creation with patients leads to🔝innovation!
#EULAR2025

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Silvia Aguilera @silvia-aps.bsky.social · Jun 14

Very happy to see again #PARE highlights in the closing session of #EULAR2025.
Michael Poelzl presented the #Highlights of the Patient and joint sessions presented by Peter Boyd, a 🧵

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Simon Stones @simonrstones.bsky.social · Jun 14

Peter and Michael representing PARE in the @eular.org 2025 Highlights Session #eular2025

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Juvenile Arthritis Research @jarproject.bsky.social · Jun 14

"This congress as a living example of what meaningful collaboration looks like" Simon Stones at #eular2025 @eular.org

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Simon Stones @simonrstones.bsky.social · Jun 14

Some nice recommendations and useful toolkit to help young people with RMDs to navigate the workplace! Find out more here: arthritispatient.ca/en/arthritis... #eular2025

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Simon Stones @simonrstones.bsky.social · Jun 14

Natasha Trehan @capa-aca.bsky.social highlights the worries young people have about getting into employment with an RMD #eular2025

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Simon Stones @simonrstones.bsky.social · Jun 14

Young people with RMDs find it difficult to access school accommodations - they want the education system to make it easier for them to get the support they need - something @raiiseuk.bsky.social takes seriously #eular2025

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Simon Stones @simonrstones.bsky.social · Jun 14

Having an RMD can disrupt financial planning, increase debt risk, and cause uncertainty about retirement #eular2025

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Simon Stones @simonrstones.bsky.social · Jun 14

The cost of living with an RMD is often hidden beneath the surface #eular2025

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Simon Stones @simonrstones.bsky.social · Jun 14

Important research from Arthritis Ireland - arthritis costs an average of €3500 per person per year, when thinking about all the additional needs due to an RMD diagnosis #eular2025

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Simon Stones @simonrstones.bsky.social · Jun 14

We need to be thinking of early adopters, early/late majority, and laggards when it comes to digital health technology, AND those who are off bounds and require alternative methods of engagement #eular2025

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Simon Stones @simonrstones.bsky.social · Jun 14

We have a great opportunity here to influence organisational health literacy, leveraging the expertise of patient organisations to inform and guide healthcare systems to make healthcare more accessible #eular2025

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Simon Stones @simonrstones.bsky.social · Jun 14

The health literacy dilemma - the disconnect between risk factors and development of disease is evident #eular2025

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Simon Stones @simonrstones.bsky.social · Jun 14

We really need to get better at proactive strategies to prevent disease / worsening symptoms within this ‘window of opportunity’ #eular2025

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