At a Glance
- Tasks: Lead a charity focused on improving lives affected by rare diseases and drive impactful initiatives.
- Company: AMEND, a dedicated charity supporting families with rare endocrine cancers.
- Benefits: Competitive salary, 30 days annual leave, and flexible working options.
- Other info: Join a passionate team and help shape the future of rare disease support.
- Why this job: Make a real difference in the lives of those affected by rare conditions.
- Qualifications: Experience in leadership, charity management, and health policy advocacy.
The predicted salary is between 55000 - 55000 £ per year.
The Association for Multiple Endocrine Neoplasia Disorders (AMEND) is a UK-based charity registered in England and Wales (no. 1153890), dedicated to improving the lives of families affected by rare, often genetic cancers of the endocrine system. We provide vital free education resources and support services for affected individuals and families, raise awareness, drive research, and advocate for those living with these rare conditions.
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 focusing 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 2027-2030 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.
