The goal of this Conference is uniting all well-known clinical researchers, biotech professionals, Medical Advisories, Academicians and decision makers to discuss possible ways to accelerate orphan drug development and access to rare disease patients, including the introduction of recent technologies and products to help aid the access of orphan drugs… Read More There’s still time to REGISTER for this conference on RARE DISEASE AND ORPHAN DRUGS 1 – 2 October
Many rare disease communities are very small which makes it hard to raise awareness by themselves, so through joining forces during this week their voices are strengthened in numbers and become one giant ‘united voice’ for rare disease awareness.… Read More It is time to ‘dazzle’, ‘strut your stripes’ and share ‘rare voices’ for #dazzle4rare2020! 9 – 14th August
Okay, let’s get on with it! The following information is to help give you reasons for why you should endorse Carole for #WEGOHealthAwards… Read More Reflecting back on 2020, come look at my advocacy! Then will you please, please, endorse me. #WEGOHealthAwards
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