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FibroFlutters social links, privacy policy and other info
FIBROFLUTTERS CHRONIC*INVISIBLE*RARE ILLNESS SUPPORT
Patient * Health * Research * Pharma * Advocacy
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.
FibroFlutters continuously
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’m using a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way!
You all need to pitch in!!
List of good things eyeforpharma have helped us with
- They gave us the opportunity to air the voices of those without the means to do it.
- Helped us to overcome a few fears regarding social engaging in large spaces and flying, and general mental health hurdles.
- Helped FibroFlutters to find it’s real sense of purpose and direction and very soon new a few fabulous things will be happening but, not spilling the beans just yet!.
- Given the opportunity to build up our self-confidence and self-worth so that we can now advocate externally at events.
- Provided us with fantastic opportunities to make a difference alongside many other patient and carer advocates from across Europe and Internationally.
- As a network we have grown , in fact doubled in size in less than 12 months which has also been because of the work we have done at the eyeforpharma conferences.
- Being recognised as a patient expert is a life-changing thing and so was realising the extent of the work that I have done to get FibroFlutters where it is at today.
- I have Paul to personally thank for being a guide / mentor, he has kept my head straight when needed and was / is the key person behind getting me to start valuing myself more. Works in progress!
Articles
Social Links
Are you a patient leader, patient / healthcare advocate?
Why not come and join me and many other amazing patient leaders / advocates at WEGO Health?!
Once you’ve signed up you will be able to request to join the Wego Health Patient Leaders Community CLOSED GROUP on Facebook. Also, have access to the NEW #WEGOHealth #PatientLeader #CommunityPlatform
Many thanks for reading ~ Carole
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