Simon Stones
@simonrstones.bsky.social
🏳️🌈 he/him • Global Patient Engagement Leader & Medical Communications Specialist • EULAR PARE Committee Chair • ✈️ • 🎭 • 📸
Our incredible @eular.org International PARE Working Group! Uniting the voices of the global patient community with RMDs beyond Europe. #pare2025
November 20, 2025 at 8:56 AM
Our incredible @eular.org International PARE Working Group! Uniting the voices of the global patient community with RMDs beyond Europe. #pare2025
Opportunities like this week are critical for bringing together patient organisation CEOs to learn, listen, and grow together! #pare2025 @eular.org
November 20, 2025 at 7:48 AM
Opportunities like this week are critical for bringing together patient organisation CEOs to learn, listen, and grow together! #pare2025 @eular.org
Our wonderful @eular.org PARE Committee and Young PARE Working Group! Proud to know and work with everyone. 💙 #pare2025
November 20, 2025 at 6:42 AM
Our wonderful @eular.org PARE Committee and Young PARE Working Group! Proud to know and work with everyone. 💙 #pare2025
Wrapping up and summarising our key reflections on managing multiple priorities as volunteers - be kind to yourself, and clear with boundaries #pare2025
November 20, 2025 at 6:35 AM
Wrapping up and summarising our key reflections on managing multiple priorities as volunteers - be kind to yourself, and clear with boundaries #pare2025
We must not underestimate the importance of stepping back and reflecting, which is why our @eular.org PARE training programme is so critical for our volunteers. So much self-reflection taking place! #pare2025
November 20, 2025 at 6:31 AM
We must not underestimate the importance of stepping back and reflecting, which is why our @eular.org PARE training programme is so critical for our volunteers. So much self-reflection taking place! #pare2025
We see the importance of investing in all members of our @eular.org PARE community, which is why our annual training programme is vital so no volunteer is left behind! #pare2025
November 19, 2025 at 8:06 AM
We see the importance of investing in all members of our @eular.org PARE community, which is why our annual training programme is vital so no volunteer is left behind! #pare2025
Stay tuned across platforms this week for updates from @eular.org #pare2025!
November 19, 2025 at 7:41 AM
Stay tuned across platforms this week for updates from @eular.org #pare2025!
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!
June 27, 2025 at 2:50 PM
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!
Delighted to be at the British Society for Rheumatology ‘Patient Voices in Rheumatology’ conference in London! #rheumatology
June 27, 2025 at 2:47 PM
Delighted to be at the British Society for Rheumatology ‘Patient Voices in Rheumatology’ conference in London! #rheumatology
Best picture of the entire Congress 🤣 #eular2025
June 14, 2025 at 12:11 PM
Best picture of the entire Congress 🤣 #eular2025
Peter and Michael representing PARE in the @eular.org 2025 Highlights Session #eular2025
June 14, 2025 at 11:29 AM
Peter and Michael representing PARE in the @eular.org 2025 Highlights Session #eular2025
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
June 14, 2025 at 10:51 AM
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
Natasha Trehan @capa-aca.bsky.social highlights the worries young people have about getting into employment with an RMD #eular2025
June 14, 2025 at 10:49 AM
Natasha Trehan @capa-aca.bsky.social highlights the worries young people have about getting into employment with an RMD #eular2025
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
June 14, 2025 at 10:47 AM
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
Having an RMD can disrupt financial planning, increase debt risk, and cause uncertainty about retirement #eular2025
June 14, 2025 at 10:35 AM
Having an RMD can disrupt financial planning, increase debt risk, and cause uncertainty about retirement #eular2025
The cost of living with an RMD is often hidden beneath the surface #eular2025
June 14, 2025 at 10:33 AM
The cost of living with an RMD is often hidden beneath the surface #eular2025
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
June 14, 2025 at 10:28 AM
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
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
June 14, 2025 at 8:10 AM
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
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
June 14, 2025 at 7:54 AM
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
The health literacy dilemma - the disconnect between risk factors and development of disease is evident #eular2025
June 14, 2025 at 7:50 AM
The health literacy dilemma - the disconnect between risk factors and development of disease is evident #eular2025
We really need to get better at proactive strategies to prevent disease / worsening symptoms within this ‘window of opportunity’ #eular2025
June 14, 2025 at 7:47 AM
We really need to get better at proactive strategies to prevent disease / worsening symptoms within this ‘window of opportunity’ #eular2025
Health literacy is a shared responsibility - small steps to improving accessibility can have an enormous impact on health and wellbeing outcomes #eular2025
June 14, 2025 at 7:42 AM
Health literacy is a shared responsibility - small steps to improving accessibility can have an enormous impact on health and wellbeing outcomes #eular2025