Tag: patient experience

RARE Summit 21 – it’s more than an event – it’s where the magic happens!

Rare Summit 2021 CRDN

RAREsummit is more than an event – it’s where the magic happens.  A powerful movement for change that provides the right ingredients and ecosystem for a better future, where productive collaborations are nurtured and flourish for real patient impact.… Read More RARE Summit 21 – it’s more than an event – it’s where the magic happens!

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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

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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

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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?

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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

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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

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