I am currently acting as Joint Interim Chief Executive (shared with Nick Meade, Director of Policy) to provide interim leadership and management of the charity. Responsible for delivery of organisational strategy, governance, finances and income generation.
As the Director of Engagement and Support my role is to develop and deliver our organisational membership programme, and the support we provide to families affected by undiagnosed genetic conditions through our SWAN UK (syndromes without a name) network. My priority is to ensure that everyone in the UK’s genetic, rare and undiagnosed community can play an active role in our research, policy and public affairs work. I lead the communications across our organisation, including delivery of our annual awareness campaigns, Rare Disease Day and Undiagnosed Children’s Day. I have a Masters in Anthropology and Development Studies from the London School of Economics (LSE) and joined Genetic Alliance UK in 2011, having previously worked for other charities such as Kids and Centre 404.