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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
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.
Registered Charity
1 - 5
To unite the global PWS community to collectively find solutions to the challenges of the syndrome.
The client requests no contact from agencies or media sales.
Thank you!
Working closely with the Fundraising Manager and Head of Philanthropy, you will support a range of fundraising activities, most predominantly researching new avenues for funding within trusts, foundations and corporate partners, completing grant applications, carrying out communications and reporting to existing funders and raising the profile of the charity through representing Action Tutoring at funder or networking events. This is a fantastic opportunity to gain experience in the world of fundraising activities, working with a passionate, committed and driven team.
Closing date: Sunday, 15th February 2026
Interviews: Wednesday, 25th and Thursday 26th February 2026
Start date: Tuesday 7th April 2026
Contract and hours: Full time permanent contract. We offer flexible hours with 9.30-4 as core hours. A full working week is 37.5 hours.
Location: This role is remote. The candidate can be based anywhere in the England. Our London office address is: x+why, 8-10, Fivefields, Grosvenor Gardens, London SW1W 0DH. Occasional travel may be required for this role.
Duties and responsibilities
- Research new opportunities for Action Tutoring to explore for fundraising and carry out initial enquiries to determine suitability to apply to trusts and foundations.
- Prepare and submit grant applications to suitable trusts, foundations and corporates, carrying out careful research to ensure the applications are as strong as possible and include relevant data and case studies.
- Work alongside the Corporate Partnerships Team to encourage corporate support through donations or grants.
- Identify and lead on local fundraising opportunities in Action Tutoring’s nine key regions, for example researching and submitting applications for local grants and to local businesses.
- Research and determine suitability of profile raising opportunities or awards for Action Tutoring to apply to, such as corporate Charity of the Year opportunities, the Third Sector Awards and Charity Awards.
A full list of duties and responsibilities can be found in the job description attached to the BreatheHR advert.
Person specification
Qualifications criteria:
- Previous experience in fundraising, or transferable experience that shows strong writing skills.
- Right to work in the UK.
We are looking for some of the following attributes, though you might be more experienced in some areas than others:
- Outstanding communicator; strong written and verbal communication skills; able to make an exciting and compelling case for support.
- Creative and ambitious.
- Proactive and tenacious personality; willing to seek out and pursue opportunities.
- Highly organised; able to prioritise, multi-task and manage work to deadlines.
- High computer literacy.
- Adaptable and open to learning and feedback.
- Committed to equality, diversity and inclusion.
- Committed to promoting and safeguarding the welfare of children.
You will likely be more successful in this role if you have:
- Prior experience of fundraising work, particularly if it is within trusts and foundations. This could be in a paid role, or on a voluntary basis or as part of work experience.
- Experience of building relationships with stakeholders.
How to apply:
To apply for this position you will need to complete and attach an application form to your application. To do this, please download the attached application form, complete the sections in full and save the new file, and then click the 'apply' button.
You will be able to upload the completed application form on the next page.
Applications without an attached application form will automatically be discounted. We want you to have every opportunity to demonstrate your skills, ability and potential; please contact us if you require any assistance or adjustment so that we can help you with making the application process work for you.
Registered Charity
51 - 100
Award-winning national education charity working towards a world in which no child’s life chances are limited by their socio-economic background.
The client requests no contact from agencies or media sales.