Part of Flutters and Strutters Organisation We’re stripey and proud We can hear hooves!… Rare Disease Advocacy with Zebra Strutters Rare Disease advocacy with FibroFlutters and ZebraStrutters This Section for Rare Disease Advocacy gives us the opportunity to raise awareness of the rare diseases that we have as founders and members. Ehlers Danlos Syndrome is one that […]
This is our new website as we transition from FibroFlutters to Flutters and Strutters. So, hello and welcome and please bare with us as we redevelop and complete website construction.
We are also a Patient Advocacy Organisation & online social media communications network.
Our services are for people affected by chronic illnesses and rare disease. This includes care providers, health professionals and those within the medical healthcare related industries. #notjustpatients
We endeavour to promote the idea of a multidisciplinary approach to health and medicine that benefits all involved. Providing a network that is open for everyone to join, follow, and meet others from across the health and medical industries.
Another key element of our advocacy beyond disease awareness is to encourage better communication through plain language summaries. Promoting the fact that everyone should be able to access and read research. Health literacy to us does not just apply to medication leaflets, but to consent forms, research surveys, journal articles and research papers. None of it should be hidden behind paywalls either!
If you feel you have skills that you can bring to help enhance us and are interested please contact us.
Please note that we are not medical professionals unless it specifically says so. We do have partnerships with Healthcare professionals and they will be introduced as such every time we post anything of theirs.