Patient Engagement Day with Prime Patient – Did you miss it?

Patient Engagement Day with Prime Patient – Did you miss it?
UPDATED to include an article by Olivia Kersey, Patient Strategist, at PEP Talks, which outlines the highlights of the very first annual Patient Engagement Day.… Read More Patient Engagement Day with Prime Patient – Did you miss it?

Rare neurological disease – Awareness campaign for AtaxiaUK #IAAD21

Taryn is delivering the Ataxia UKs medical guidelines to her GP in Sunderland for the campaign. Educating doctors is important to help this rare condition, ataxia, get recognised. Knowing about the disease can help people with symptoms to get noticed sooner… and diagnosed quicker.… Read More Rare neurological disease – Awareness campaign for AtaxiaUK #IAAD21

Patient Engagement With Patient Focused Medicine Development

The PFMD network is making sure to aggregate existing knowledge and tools, identifying good practices and coherently combining them before designing accessible and useful avenues for the various audiences that will use them.… Read More Patient Engagement With Patient Focused Medicine Development

Irritable bowel syndrome (IBS) what is it? – video | Patient | Dr Sarah Jarvis

Do you have Irritable Bowel Syndrome (IBS)? Irritable Bowel Syndrome can be quite debilitating and many members of FibroFlutters have been diagnosed with it. To help people understand the condition better, and raise awareness, I share this video and information leaflet. The intense pain leaves me pacing and then writhing, and pacing and writhing…. …… Read More Irritable bowel syndrome (IBS) what is it? – video | Patient | Dr Sarah Jarvis

Precision Medicine Forum PATIENT WEEK – Change of date.

Precision Medicine Forum – Patient Week convenes healthcare professionals, researchers, industry, payers and patients/patient advocates in a unique setting which puts the patient front and centre of the discussions. This time around there will be panels sessions, roundtables, 1-2-1 networking and group networking sessions.… Read More Precision Medicine Forum PATIENT WEEK – Change of date.

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

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!