Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020

After having constant dislocations in my knee where the PVNS tumour was removed from 6 years years previously had caused major damage. This was worsened with my hEDS which effects all of my joints. … Read More Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020

It is time to ‘dazzle’, ‘strut your stripes’ and share ‘rare voices’ for #dazzle4rare2020! 9 – 14th August

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

Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?

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?

Up for debate next week | Patient Summit | Humanising Healthcare, Building trust, Health Literacy and Disease Awareness

Humanising Healthcare is what I’ll be discussing with friend and fellow patient advocate Cécile Tardy, but it’s just one of the Patient-Led Round-Table topics! Humanising healthcare: Carole Scrafton & Cécile Tardy Healthcare is undergoing a digital transformation, with technology (e.g AI, big data) aiming at delivering more personalised, immediate and accessible care. While the benefits… Read More Up for debate next week | Patient Summit | Humanising Healthcare, Building trust, Health Literacy and Disease Awareness

This #healthapp is definitely worth trying if like me you’re dreadful at remembering to take your #medications

The attractive thing for me about this app is the fact that I can donate to charities just for taking my medications. … Read More This #healthapp is definitely worth trying if like me you’re dreadful at remembering to take your #medications

Patient-Centricity: An Appraisal | Ross Davies | eyeforpharma | 30 January 2019

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

Only 4 weeks to go and we’ll be packing our little cases and boarding the train to London, will you be there? The eyeforpharma Patient Summit

Helping to close the gap between pharma and patients and increase relations, encourage collaborations and stave off the ideas that patients can be manipulated.

The Im-patient Conference which is new, and its bold.

No longer is eyeforpharma HQ in the driving seat, instead it is entirely designed, created and hosted by patients. We believe that in doing so, we will capture the true essence of what patients want – and put them in the driving seat.

Come and see me take part:  17th October | 17:00 – 17:40 (Day 2) 

Panel: Candid patient perspectives on the good, the bad and the ugly of service design… Read More Only 4 weeks to go and we’ll be packing our little cases and boarding the train to London, will you be there? The eyeforpharma Patient Summit

About Us – #PatientVoice #PatientEmpowerment #PatientAdvocacy #PatientCentricity #PatientLeaders

Due to a number of bad experiences with social media, in the earlier days, I developed a fear of being photographed or filmed.  I am also using these new opportunities in the ‘REAL WORLD’ to help  myself, hopefully, overcome these fears to give me more opportunities for advocacy. … Read More About Us – #PatientVoice #PatientEmpowerment #PatientAdvocacy #PatientCentricity #PatientLeaders