The burning question now 14 months on from that is how are FibroFlutters representing and engaging with ‘all-stakeholders’ themselves. After all it really would be rude of us to demand the industry to respect such a notion and for us not to return the favour and do it ourselves. … Read More Fibroflutters #SocialMedia #healthadvocacy and #allstakeholder approach to #healthcare, across the globe – Peeking at the statistics!
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
“Over four in ten adults in the UK are affected by food allergy or intolerance. But how can you go about finding out what the culprit is?”… Read More Patient Newsletters | 8 June / 19 May 2019
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
> I am a supporter of pharma community platforms, but as a patient wish there was one platform for all of them rather than insular separate ones. I believe that compiling resources and knowledge could lead to better results. Plus, it would make them easier to find.
>Being invited back to #efpbarca this year was indeed exciting and also an honour. This review that follows will give you a few insights into my week at Barcelona with eyeforpharma as a ‘Volunteer’ Patient Advocate, and as ‘Impatient Conference Steering Committee member, attending through their ‘Patient Policy’.
Hope you enjoy reading!… Read More #ChronicillnessVOICE SPECIAL EDITION ‘PHARMA’ APRIL 2019 | eyeforpharma Barcelona review
I am a supporter of pharma community platforms, but as a patient wish there was one platform for all of them rather than insular separate ones. I believe that compiling resources and knowledge could lead to better results. Plus, it would make them easier to find.
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
Read the article, via the link button below, to gain perspectives from
Jen Horonjeff and Carole Scrafton as they give us their appraisals regarding how patient centricity appears to show a huge gap between ‘patient compliance’ and ‘patient experience’.… Read More Patient-Centricity: An Appraisal | Ross Davies | eyeforpharma | 30 January 2019
‘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
It will make it easier for chronic organisations and groups that offer support to find each other once it get’s going. It is currently a free service too and they build your page saving you the hassle and energy.… Read More Look at us on this chronic illness related community ‘aDoddle Map’ for groups, charities and related organisations to help locate each other!