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Top job
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Seeking an inspiring CEO to lead our international mission. Help us improve the lives of everyone affected by Prader-Willi syndrome (PWS)!
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Page 2 of 18
Remote
£42,000 pro rata (£28,000 - 25 hour week)
Part-time (25 hours per week)
Contract (2-years)

Actively Interviewing

This organisation is scheduling interviews as applications come in. They're ready to hire as soon as they find the right person. Don't miss your opportunity, apply now!

Job description

The International Prader-Willi Syndrome Organisation (IPWSO) is seeking a talented and motivated CEO who will deliver our organisational strategy which aims to improve the lives of all those affected by a rare genetically determined disorder called Prader-Willi syndrome (PWS). 

The role of CEO at IPWSO is both challenging and rewarding. You can help deliver change for people affected by PWS from across the globe by helping us build solidarity, promoting scientific reasoning and research, helping to foster new relationships, supporting our members, and striving for equality for everyone affected by the syndrome.

You will work alongside passionate volunteers and experts in PWS from across all continents and with a skilled and small staff team based in the UK. We are all dedicated to making a tangible difference!

For the full person specification and the JD, please refer to the attachment below.

#CEO #Chief Executive #Chief Executive Officer 

Application resources
Application Instructions

Please see the application pack for the full Job Description and Person Specification.
Apply on the Charity Job website and submit a copy of your CV with a covering letter of no more than two A4 pages, describing how you meet the requirements of the role and the criteria outlined in the Person Specification. Include in your covering letter the names, position, organisation, email, and telephone contact of two referees, one of whom should be your current/most recent employer. References will only be sought once your express permission has been granted.

We will be reviewing applications and interviewing applicants on a rolling basis. We encourage you to apply early, as the advertisement may close before the 19 February 2026.

Organisation
IPWSO View profile Organisation type Registered Charity Company size 1 - 5

To unite the global PWS community to collectively find solutions to the challenges of the syndrome.

Posted on: 20 January 2026
Closing date: 19 February 2026 at 17:00
Tags: International Development, Advocacy, Strategy, Governance / Management

The client requests no contact from agencies or media sales.