Speakers

I have the privilege of leading the dedicated team at Genetic Alliance UK, working to improve the lives of individuals living with genetic, rare, and undiagnosed conditions. Having worked here for 20 years, my commitment lies in ensuring that the voices of our amazing member organisations and the people they support, remain central to everything we do. This is especially crucial as we complete our contribution to the implementation of the UK Rare Disease Framework and look to the future for continued strategic working in the context of the 10 Year Plan and upcoming devolved elections.

 I collaborate closely with our board of trustees to uphold transparent and effective governance, while driving the charity’s strategic direction. A significant part of my work is our advocacy, which is focused on enhancing outcomes for all those affected by genetic, rare, and undiagnosed conditions. We achieve this through evidence-based influencing and strategic campaigning. Our long-standing priorities include improving access to therapies for rare conditions, advancing genomic medicine, and reforming the UK's approach to screening for rare conditions.