RAREfest22 – At the forefront of this event are the patients themselves!

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!

Real World Evidence Live: Rare Diseases & Innovative Therapies

Real-World Evidence 2022: Rare Diseases and Innovative Therapies will unite healthcare stakeholders to discuss and advance agile strategies for accelerating collaboration and patient focus in a post-COVID Europe.… Read More Real World Evidence Live: Rare Diseases & Innovative Therapies

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.… Read More My experience – First face-to-face event in 2 years!

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?

Clinician Series is back with a Fresh new format – AIMed

Starting on September 28 and 29, AIMed will go live with a weekly series of high quality content. Shorter, more focused sessions available to view for free live or on-demand.… Read More Clinician Series is back with a Fresh new format – AIMed

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!

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.… Read More International Ataxia Awareness Day 25th September with ‘Ataxia and Me’

#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.… Read More #chronicillnessVOICE Aug 17 health, medical, pharma and research news

We’re off mobilising for charity – 1 month long Superhero Series challenge

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.… Read More We’re off mobilising for charity – 1 month long Superhero Series challenge