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.
Category: Rare Disease Advocacy
My experience – First face-to-face event in 2 years!
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.
Voice your opinions to improve medical products and services
Get paid to Voice your opinions. Help companies develop better products and services to help provide better healthcare for patients. Create better patient outcomes!
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.
International Ataxia Awareness Day 25th September with ‘Ataxia and Me’
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.
Great opportunity to get together with other guys that have rare diseases and mental health issues.
Meet in a safe space, talk about what you are going through and offer support to each other if and where needed.
#chronicillnessVOICE Aug 17 health, medical, pharma and research news
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.
Using my rollator with its seat for those appropriately paced stops we hope to get out of the back lane this time. Last year the pandemic put restrictions on how I could complete the challenge.
#chronicillnessVOICE July 6, health, medical, pharma and research news
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.
Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!
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.