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CEO Needed for Small but Mighty Rare Disease Charity
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Page 3 of 5
Tonbridge, Kent (Hybrid)
£50,000 - £55,000 per year
Full-time
Permanent

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Job description

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 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. 

Application resources
Organisation
Association for Multiple Endocrine Neoplasia Disorders (AMEND) View profile Organisation type Registered Charity Company size 1 - 5

The object of the CIO is to relieve people who suffer from Multiple Endocrine Neoplasia (M.E.N.) of all types, their families, friends and carers

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Posted on: 06 July 2026
Closing date: 05 August 2026 at 23:30
Tags: Project Management, Advocacy, Cancer, Health / Medical, Strategy, Sustainability, Wellbeing

The client requests no contact from agencies or media sales.