Supporting Kirsty Hoyle the CEO of
Metabolic Support UK to bring her idea of the Thoughts into Action to life, through strategic guidance, project management and policy analysis to help reframe the conversation in rare diseases to ensure people have the opportunity to 'live well'
Working with Natalie Frankish from Genetic Alliance UK to create and deliver the Why Medicines Matter Project to understand how access to medicines for rare conditions has changed in Scotland since the publication of the Review of Access to Medicines report by Dr Brian Montgomery in 2016.
As a regular Industry Contributor to Rare Revolution Magazine, I provide my views on various rare disease challenges.
Working as a Policy Advisor and Interim CEO to the RDNN I developed and ran a survey of nurses in Wales to understand the challenges of care coordination for rare conditions. Based on the analysis of the survey results, I delivered key recommendations to the Rare Disease Implementation Group to inform their work on the Welsh Action Plan for Rare Diseases.
When asked to write a blog for the Evidence Based Nursing Journal to mark Rare Disease Day in 2021, I set about researching the role of specialist nurses in improving care coordination in rare conditions. I see nurses as a key to improving the care people living with rare conditions receive but they need to be properly supported to do this.
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