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.
Looking for a local support group then please sign up for a basic membership to become a member, it’s free and you get access to their magazine ‘Fragile Links’.… Read More Ehlers-Danlos Syndrome Awareness in the Month of May
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
Not everyone with EDS has hypermobility, and not everyone with hypermobility has EDS!… Read More Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?
In all honesty I am amazed that I have done all this especially considering my health was quite bad last year. I do tend to distract myself as much as possible, but crikey, I got around quite a bit didn’t I. – closing thoughts… Read More Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton
I decided to test how long it would be before my back began to ache when sat in a regular dining chair, one with no arms and a straight back. It wasn’t long before I began to notice little things….… Read More Stretch, 1, 2, 3, 4… Bend 1, 2, 3, 4 … | ActivePosture shirt – Product review | Carole Scrafton (sponsored post)
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
‘Attending an event during the middle of hibernation was a little daunting but I wasn’t going to let that stop me from going. ‘
What a way to celebrate our newsletters 1st birthday … Read More Special edition Happy new year & ‘Happy birthday’ #chronicillnessVOICE 1yrs young| January 2019 ~ a health newsletter for everyone! #chronicillness #notjustpatients
This meeting is also for our Fibromyalgia members and Fibromyalgia Action UK supporters as an extra meeting on top of our sister FMA UK Fibromyalgia group’s meeting on the FIRST MONDAY OF THE MONTH which our members are welcome to Join.… Read More Home news | Next meet up is on 20th November
Headliner: Coming Together to Put Patients First in Headache Treatment | By Stephani Sutherland
Coming Together to Put Patients First in Headache Treatment… Read More RELIEF: PAIN RESEARCH NEWS, INSIGHTS AND IDEAS |BROUGHT TO YOU BY THE IASP PAIN RESEARCH FORUM