At a Glance
- Tasks: Lead a charity focused on improving lives affected by rare diseases and drive impactful initiatives.
- Company: AMEND, a dedicated charity for rare endocrine disorders with a strong mission.
- Benefits: Competitive salary, 30 days annual leave, and flexible working options.
- Other info: Join a supportive team and help shape the future of rare disease care.
- Why this job: Make a real difference in the lives of families facing rare conditions while shaping health policy.
- Qualifications: Proven leadership experience and passion for healthcare 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.
Chief Executive Officer in Tonbridge employer: Thewild
The Association for Multiple Endocrine Neoplasia Disorders (AMEND) is an exceptional employer, offering a meaningful opportunity to lead a dedicated charity focused on improving the lives of families affected by rare diseases. With a supportive work culture that values collaboration and innovation, employees benefit from generous annual leave, flexible working arrangements, and the chance to make a significant impact in health policy and patient education. Located in Tonbridge, Kent, AMEND provides a unique environment for professional growth while advocating for those in need.
