Charity CEO

This is an exciting opportunity for a new Chief Executive Officer to lead our well-respected rare disease patient organisation through the next phase of growth and impact, in particular focussing on financial sustainability and influencing health policy for these rare diseases. These sit alongside the other grass-roots duties of a small charity CEO, including working with our Medical Advisory Team to develop new and maintain existing patient education resources, and overseeing our support services including volunteers and a professional psychological counselling service. Reporting to and working with the Board of Trustees, the CEO will be responsible for delivering our Strategic Plan, ensuring robust governance, and driving forward our mission to improve the lives of people affected by rare diseases. The CEO manages the part-time Executive Administrator and works with up to 30 current volunteers (patients, carers, and health professionals) to deliver services with impact. This role includes occasional weekend work, as well as approximately 15 days travel (national and international) per year to represent and advocate for the charities' beneficiaries.