RAREfest22 is the world’s only rare disease-inspired festival attracting an audience of stakeholders alongside the public. Festival-goers listen to expert talks, watch films, interact with around 25 exhibits, hear powerful patient stories and mingle with those taking part and others attending.… Read More RAREfest22 – At the forefront of this event are the patients themselves!
This week I was lucky enough to attend the ‘Patient Centricity and Collaboration Global Congress 2021, Europe, that was held in London on 8-9th November. By Paradigm Global Events, that was held in London on 8-9th November. The last time I attended such an event in person was in October 2019, in London. In this article I discuss it, my experience and share the messages that I took with me.… Read More My experience – First face-to-face event in 2 years!
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?
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
Get paid to Voice your opinions. Help companies develop better products and services to help provide better healthcare for patients. Create better patient outcomes!… Read More Voice your opinions to improve medical products and services
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!
The word ‘ataxia’ comes from the Greek ‘a taxis’, which means ‘without order’.
Our mission is to bring back some of the order to the lack of order
It is the term used for a group of neurodegenerative diseases that affect balance and coordination.… Read More International Ataxia Awareness Day 25th September with ‘Ataxia and Me’
Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.… Read More #chronicillnessVOICE Aug 17 health, medical, pharma and research news
A simple goal of signal boosting rare and undiagnosed patient and community messages. August week long event, joining allies, advocates, small and large non-profit organisations, and others who wish to elevate rare and undiagnosed voices.… Read More Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!
The Coronavirus Pandemic has got us all considering how to navigate clinical trials and what are the best approaches for patient recruitment and retention. It is my belief that implementing patient engagement from the onset of the trial during trial design could be the beneficial answer. … Read More CLINICAL TRIALS NEXUS EUROPE – Digital Event November 26-27th
