Sue Farrington
@FarrSue01
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Chief Exec Scleroderma & Raynaud's UK (SRUK) - @wearesruk - President FESCA - Chair Patient Information Forum (PiF) @pifonline
Joined August 2011
We are happy to see The Independent interviewing Professor Francesco Del Galdo during #RaynaudsAwarenessMonth, who spoke about some of the work he has done with us and shared some ways to help boost your circulation and enhance blood flow. Read now:
independent.co.uk
From simple lifestyle changes to dietary adjustments, here are eight natural methods to help boost your circulation.
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Research results show the importance of COVID vaccination and a personalised approach for RAIRD patients 👉 https://t.co/gxbLDWbRiN
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Looking forward to European PF Patient Summit 2024 and catching up with colleagues & friends @EU_IPFF @Fscleroderma @WeAreSRUK
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Great to be here at #BSR24 with our RAIRDA colleagues @WeAreSRUK @LUPUSUK @vascuk @Sjogren’sUK Please come and visit our stands
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Great session on getting to grips with the basics of AI at #BSR24 and how it can be deployed in rheumatology
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Really important that patients and the wider public understand the huge benefits but also the potential challenges with the use of #artificalintelligence when accessing #Healthinformation
PIF has published a position statement on the use of #ArtificialInteligence in #HealthInformation. Developed in collaboration with our #AI working group, it aims to help information producers understand the AI landscape and how to manage it. https://t.co/TfKnSev3da
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Having great fun playing AI Hospital to consider the challenges, benefits & risks of using AI in healthcare with One Vision Health @eupatientsforum
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Looking forward to session on AI literacy for patient advocacy with @eupatientsforum @Fscleroderma @WeAreSRUK
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It’s critical that we diagnose patients with PAH as soon as possible. So thank you @gkovacs for all the important work you are doing.
🌟Now at the WSC24 we are privileged to have @GKovacs delivering a lecture on PAH - a critical area in scleroderma. His expertise sheds light on new strategies and developments in SSc-PAH. #Prague2024 #SclerodermaResearch #SScWorldCongress
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Thanks @Boehringer for the opportunity to discuss how we can improve the quality of the conversation between patients & physicians so we become proactive partners @iaiaraia @sclerodermaUM @profchrisdenton @
🤝 Today's #8thWorldSclerosisCongress features the Boehringer Ingelheim Round Table, an essential discussion on Improving Communication between Physicians and Patients with SSc.@Boehringer
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It was an amazing couple of days. So great to finally meet up with everyone in person in the beautiful Prague. Thanks to all our great speakers - patients, clinicians & researchers @Worldsclerofnd @vaclavpetr
The 2nd and final day of #SSCPatientCongress brought interesting insights into the gut's role, addressing fatigue, & exploring the latest in #scleroderma research, & provided practical advice for patients & HCPs. Thanks to everyone who participated & contributed! Until next time!
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Shockingly, rehabilitation isn't available everywhere in the UK. Watch the #RehabLegends describe what rehab has meant to them. Help us end this postcode lottery by signing the petition. #RightToRehab
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It is great to see the @DHSC Rare Diseases Action Plan reference the work we are involved in, to develop the evidence base for a NICE quality standard for rare disease #RareDiseaseDay #RAIRDaware
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As high bills continue to threaten the health of those living with debilitating conditions like Raynaud's; SRUK is appealing to energy companies to provide financial assistance to them. Find out more: https://t.co/UGGR7uBcQh
#CostofLiving #EnergyBills #Raynaud's
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Great to attend the #RareDiseaseDay2024 event at the Houses of Parliament & hear @Andrew4Pendle talk about the importance of improving treatment & care for rare disease patients @WeAreSRUK @RAIRDA_org @GeneticAll_UK
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Many thanks to @JoelJamesSWC for sponsoring our RAIRDA event & to his team for all their help. Great opportunity to raise the profile of rare autoimmune rheumatic diseases @WeAreSRUK @LUPUSUK @vascuk @SjogrensUK
The RAIRDA team are delighted to be at the Senedd today for our drop-in event sponsored by @JoelJamesSWC, raising awareness of rare autoimmune rheumatic diseases @LUPUSUK @vascuk @WeAreSRUK #RAIRDaware
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Great to be here in the Welsh Senedd with Liz @WeAreSRUK other patient representatives from @RAIRDA_org to meet M
Here in the Senedd, RAIRDA co-chair Sue Farrington @FarrSue01 and @WeAreSRUK patient representative Liz are raising awareness and calling for better care and treatment for people with rare autoimmune rheumatic diseases #RAIRDaware #RareDiseaseDay2024
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A most well deserved appointment for @DameCarolBlack who works tirelessly to drive change to improve the health & wellbeing of so many people. Thank you for everything you do for our community.
Huge Congratulations to SRUK president @DameCarolBlack who has been made a Dame Grand Cross of the Order of The British Empire (GBE) for public service. It's the highest rank in the Order & very rarely awarded; recognising exceptional service to the UK, it's very well deserved.
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I look forward to working with you all in 2024 to drive the change we need to #BloomTogether
🌟As the festive season approaches, we'd like to highlight the strength and resilience of our #scleroderma community. We wish you all a restful holiday. May you use this time to connect with your loved ones because #FindingTheLightToBloom" is easier when we're together.
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Great piece of research led by Dr Melanie Sloan @Cambridge_Uni has shown the challenges patients with rare rheumatic conditions can face when they are not listened to @thetimes @LUPUSUK @WeAreSRUK @vascuk
Great quote by @FarrSue01 in @thetimes today: It’s time to move on from the paternalistic, and often dangerous, ‘doctor knows best’ to a more equal relationship where the patients with lived experience and the doctors with learnt experience work more collaboratively.#StopPF
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