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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!
About you
We are looking for a highly motivated and experienced individual, who is capable of creating and delivering a strategic approach to commercial partnership development. The role requires an inspiring, solutions-focused and forward-thinking individual, with a proven track record in commercial development. Candidates should have an understanding of the relationship between charities and the healthcare industry, including pharmaceutical companies, and be able to show relevant experience of taking a strategic approach to creating and further developing a commercial development proposition, within either the voluntary or private sectors.
A self-starter, happy working independently, and as part of a team, we are looking for a strategic thinker with well-developed business/commercial skills and the ability to translate strategy into action. The successful candidate will be an accomplished communicator, who is able to create new and build existing relationships, and work in partnership with internal and external stakeholders. As well as creating strategy, you will need to be comfortable delivering all aspects of business development including initial prospecting, preparation, presentation, negotiating, handling objections, closing, and ongoing partnerships stewardship and development.
About the role
After extensive scoping work throughout 2025, we are launching an exciting project to create a step change in the way we deliver our organisational knowledge, clinical expertise and information to add commercial value to potential customers across a wide range of sectors, including healthcare, diagnostic and pharmaceutical companies. This new role of Head of Commercial Development will own the creation, development and delivery of this work.
You will be responsible for leading the creation of a commercial proposition for Myeloma UK, which will deepen relationships with the healthcare industry, pharmaceutical industry and other associated sectors, to promote Myeloma UK’s knowledge and expertise for commercial return. You will lead, develop and deliver our commercial development strategy, to include research, partner development and ongoing portfolio growth and development, to deliver a long-term, sustainably growing income stream from Myeloma UK’s commercial relationships. In addition, you will be expected to develop strong collaborative relationships with all stakeholders, including key individuals across the organisation.
About us
Myeloma UK is the only UK charity focused on the incurable blood cancer, myeloma and its related conditions. We provide support and influence access to treatments, while researching a cure. Thanks to life-extending treatments and support, today many people affected by myeloma are able to live longer and to live well. Together, we support, so no one faces myeloma alone.
We are committed to bringing together the best and brightest people to help us ensure that every person affected by myeloma has an empowered present and a hopeful future.
Our ultimate goal is to find a cure and make myeloma history. Until then, our mission is to help every person living with myeloma, live well, for as long as possible. We are committed to diagnosing myeloma earlier, discovering and sharing knowledge, transforming the patient experience and influencing positive change.
Our culture
Wellbeing and staff engagement are at the heart of our culture. We offer employees a range of benefits including a pension salary exchange scheme, flexitime, flexible working which includes both home and hub-based office working, health plan, employee assistance plan and holiday purchase scheme. We are committed to providing learning and development opportunities for all our employees.
How to apply
If you think you would be a great fit for this role, get in touch and tell us more about yourself by sending us:
1. A cover letter (no more than 2 pages long) telling us more about you and what you think makes you a good fit for this role
2. A CV that sets out your career history, with key responsibilities and achievements
Applications close at 9.00 am on 23 February 2026. First interviews will be held on 2 March 2026, with second and third stages taking place on 4 and 9 March 2026.
Myeloma UK is an equal opportunities employer and always welcomes applications from suitably qualified and eligible candidates regardless of:
· sex
· race
· disability
· age
· sexual orientation
· gender reassignment
· religion or belief
· marital status
· or pregnancy and maternity
Please note, you will be asked to provide evidence of your eligibility to work in the UK prior to interview selection.
The client requests no contact from agencies or media sales.