I manage the activities of Rare Disease UK, a multi-stakeholder campaign that provides a united voice for the rare disease community, launched by Genetic Alliance UK in 2008. My work spans public affairs, policy, campaigns and communications. This includes overseeing activities to mark international Rare Disease Day in the UK, campaigning for UK-wide policy to meet the needs of people affected by rare diseases, and running the Patient Empowerment Group (a collective of expert patient representatives). I also provide the secretariat to the All Party Parliamentary Group on Rare Genetic and Undiagnosed Conditions.
Prior to working at Genetic Alliance UK, I worked for a poverty relief charity as their Policy and Public Affairs Officer. I also have experience working for Amnesty International and in Parliament. I have a degree in Politics and a Masters in International Relations.