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

May 12th International Fibromyalgia Awareness Day – Happy 5th Birthday FibroFlutters

Our loyalty has remained since 2014 and as a result today on our fifth birthday I ask you to please help us to support their 2019 International Awareness Day Campaign by ‘becoming Fibromyalgia Aware’. Please visit the website to learn about the condition, but also learn about the work that the charity does in support of research and education.… Read More May 12th International Fibromyalgia Awareness Day – Happy 5th Birthday FibroFlutters

#chronicillnessVOICE | Health & medical related mini-mag for everyone| February 2019 | #notjustpatients

Feature: ‘Find Me A Cure’
Very soon FibroFlutters website will have it’s own very unique widget for readers to search for appriate clinical trials for any illness anywhere in the World and Find Me A cure have already sent me some designs to choose from.… Read More #chronicillnessVOICE | Health & medical related mini-mag for everyone| February 2019 | #notjustpatients

The Ehlers-Danlos Support UK  |  Your weekly update from EDS UK!  | 24 August 2018

Featuring  >>>

Love Amazon? Sign up to Amazon Smile and support EDS UK!
Meet our new Medical Advisory Panel Members
Cheer on our Great North runners!
I cycled 5,000 miles round Britain to beat my illness and found kindness I never knew existed
Kirsty’s Big Fun Run challenge
Ezra the Zebra book coming soon!… Read More The Ehlers-Danlos Support UK  |  Your weekly update from EDS UK!  | 24 August 2018

About Us -How we began

There are a good number of people in Sunderland with Fibromyalgia and varying other long term chronic chronic conditions, actually, and it shocked me in the beginning.
At the time I was volunteering and advocating for a charity called FibroAction and so became a voice for the charity across the NE UK with FibroFlutters members, and readers, this is because even though there were only 5 of us  but we spanned 3 counties!… Read More About Us -How we began