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
“For 2019, we have a practical focus on transforming the whole pipeline – R&D, clinical trials and commercial – demonstrating how patient-led design can reduce cost whilst driving effectiveness and value.”… Read More I’m speaking at the @eyeforpharma PATIENT SUMMIT EUROPE | Pharma’s home for patient-centricity in Europe
> 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.
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
Let’s not lose momentum – Im-patient’s must go onwards to keep achieving results! We want your support to ensure that we can run another im-patient event in Barcelona, which is where the idea was first forged – and where there will be quite a large #pharma audience of around 1300 people. I am of course… Read More Asking all #patients! Would you like to help shape the direction of ‘Im-patient’ and help design a conference for #pharma
“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