FibroFlutters
Locally we’re a Support Group for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK …
… but we also offer online support, advice and advocacy via our social media network , chronic illness portal, across the globe.
You can e-mail me:
Social Links & other resources
WEGO HEALTH Patient Leaders Connection
It is that time of year to recognise each other as patient leader, health advocates and the work that we all do within the realms of chronic illness and healthcare #WEGOHealthAwards
What’s a Patient Leader?
A Patient Leader uses their own health journey to raise awareness, share knowledge and help others. They leverage social media to amplify their voice, connect with peers, and build community. They are the thought leaders and transformers industry leaders turn to for insights and expertise they need to build a more patient-centered, consumer-driven health care ecosystem.
https://www.wegohealth.com/for-patient-leaders/about-patient-leaders/
Wego Health are the world’s largest network of over 100k Patient Leaders, from across a huge range of all chronic, invisible and rare health conditions and topics.
This Patient leader’s network also collaborates with pharmaceutical companies, life-sciences companies, agencies, consultancies, startups and all types of organisations from across the medical healthcare industries.
As an individual who co-ran a patient group I joined the network as a Patient leader and then introduced FibroFlutters as an organisation this year, spring 2019. The FF profile isn’t quite complete and I’m not quite ready to don FibroFlutters with a ‘merchant’s hat’ just yet!
The WEGO Health Awards program was created to recognise and honour those making a difference in the online health community.
Nominate for your favourite patient leaders via this button link:
#WEGOHealthAwards ENDORSEMENTS ARE OPEN
Everyone keeps telling me what a great thing it is that I do. It’s fab that I advocate so strongly in order to influence changes that help to improve #patient outcomes.
That Fibroflutters are seen to offer and give people with #chronicillness #support and #advice, that I share a broad range of health and medical related news in newsletters. That I am using multi-disciplinary and centric approach to giving news and running the network in a #crossfunctional manner whilst sharing #healthnews from across the #medical #healthcare industries & the fact that I have faced my #mentalhealth fears to get up in person and speak up at events.
I’m told that I’m awesome, pretty fantastic and provide a great #communications avenue for people across varying social media channels for everyone &
#notjustpatients #clinical #research #pharma #therapeutics #AI #digital #HCP‘s #diagnostics #students #clinicians #physicians #healthcomms
People say that it’s great that we get involved with research and pharma as we try to promote the importance of #clinicaltrials and the necessity of patients being involved in the whole process. #Advocating for #caregivers and the importance of listening to them as well as #doctors, #nurses and patients.
Please endorse me and Fibro Flutters HQ if you think the above is true via the nominee profile link below.
Many thanks for your time and wishing you all wellness and I hope you choose to support us. #WEGOHealthAwards
Carole Sian
#patientleaders #patientinvolved #patientvoice #PatientAdvocacy #ResearchAdvocacy #HealthAdvocacy #PharmaAdvocacy
The Arthritis and Musculoskeletal Alliance (ARMA)
Knowledge Hub
It’s a tool for sharing knowledge and collaboration, an online library of resources. If you know of reports, evidence, guidelines that should be posted, please let those authors and organisations know they can add content.
The Arthritis and Musculoskeletal Alliance (ARMA)
Knowledge Hub
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