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) Health communications & Sharing information #chronicillnessVOICE, Nuzzel News, Paper.li’s, News-Medical newsletters Social media community platform link Where can you find us? FibroFlutters Super Highway >>> Our network… Read More About Us
Many thanks for taking a look and if you enjoy the content please can you share it with your peers and colleagues.
It is purposefully designed to keep you reading for a little while as it will be a couple of months before the next edition will be published. … Read More #ChronicIllnessVoice | Pharma / Science / Tech / Digital / AI | A mix of news, events and Resources
> 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
“what a confusing argument for an onlooker from ‘pharma’ who wanted to know ‘who to trust’ as a patient expert when they’re witnessing different types of ‘patient-expert’ arguing about what constitutes one.”
~ CAROLE, OWN OPINION!… Read More Updated Version! New Look! | #chronicillnessVOICE | SPECIAL EDITION | eyeforpharma Patient Summit Europe ~ My experiences, incl. Im-patient | Carole Scrafton
Good morning from FibroFlutters, wishing you all wellness as always and a fabulous week
Thank you for your patience during this last few months, or so, whilst I have been moving house and dealing with big life-changes.
Enjoy the updated newsletter after it’s break and hope to get back to normality very soon!… Read More #chronicillnessVOICE | 12 November 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients
A belated newsletter due to technical issues with my broadband connection intermittently going off all the time!… Read More #chronicillnessVOICE | 2 November 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients