Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!

A simple goal of signal boosting rare and undiagnosed patient and community messages. August week long event, joining allies, advocates, small and large non-profit organisations, and others who wish to elevate rare and undiagnosed voices.… Read More Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!

Ehlers Danlos Syndrome resources. Where to find information and support.

Ehlers-Danlos Syndrome Awareness There are many members and supporters of FibroFlutters who have Ehlers-Danlos Syndrome (EDS), or Hypermobility Spectrum Disorders (HSDs). Including myself and fellow co-founder Vicky Green who has been officially diagnosed with Hypermobility Type EDS (hEDS). Raising awareness of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders is part of our advocacy. In our earlier… Read More Ehlers Danlos Syndrome resources. Where to find information and support.

Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020

After having constant dislocations in my knee where the PVNS tumour was removed from 6 years years previously had caused major damage. This was worsened with my hEDS which effects all of my joints. … Read More Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020

About Us

Contents About Us – our aims and desires, missions and wants as a patient led group. Advocacy & raising awareness Advocacy & raising awareness (Continued from Page 2) – Including: Updated Version! New Look! | #chronicillnessVOICE | SPECIAL EDITION | eyeforpharma Patient Summit Europe ~ My experiences, incl. Im-patient | Carole Scrafton Is pharma being… Read More About Us