Chief Executive Officer

We are  seeking a passionate and committed Chief Executive Officer who will help us unite the global Prader-Willi syndrome (PWS) community to collectively find solutions to the challenges of the syndrome. Our vision is to create a world where people with PWS receive the services and supports they need to fulfil their potential and achieve their goals. PWS is a complex genetic disorder characterised by low muscle tone and failure to thrive at birth, and later evidence of short stature, intellectual disabilities, behavioural and psychiatric challenges and impaired satiety.

IPWSO is the international umbrella body for PWS associations around the world with 47 full paying country members and contacts in over 120 countries. We are committed to supporting people with PWS and their families whatever their needs and wherever they live.

What we do

We build communities between people with Prader-Willi syndrome, their families and the professionals who support them to share knowledge and expertise and improve outcomes for people with Prader-Willi syndrome and their families everywhere.

We want everyone with Prader-Willi syndrome to get equal access to diagnosis and treatment no matter where in the world they live. We want to ensure better, more consistent outcomes for people with the syndrome and their families.

We work to ensure research into the condition works for everyone and reflects the diverse experiences and environments of those living with the syndrome around the world today.

Main purpose and scope of role

Working closely with the President and the Board of Trustees, the CEO will provide strategic vision and leadership and will strive to ensure that IPWSO delivers its charitable purposes and remains successful and sustainable.

Duties and Responsibilities (to include but not limited to)

Leadership

·         Strive to ensure that the charitable purposes of IPWSO are followed and that it delivers the public benefit set out in its governing document.

·         Take overall responsibility for the management and administration of IPWSO.

·         Provide support and information to the Board of Trustees to enable trustees to fulfil their roles and legal responsibilities.

·         Pursue close cooperation with, and accountability to, IPWSO’s members.

·         Act as an ambassador for IPWSO by representing IPWSO at events and networking to build new strategic relationships.

·         Keep abreast of relevant new research, treatment recommendations and service developments for people with Prader-Willi syndrome.

Governance

·         Strive to ensure that IPWSO has governance systems in place that enable it to consistently fulfil its legal, statutory and regulatory responsibilities.

·         Maintain awareness of risks and changes in the external environment that could affect IPWSO and advise the Board of Trustees accordingly.

·         Together with the President manage complaints (including from whistle-blowers) and recommend actions to the Board of Trustees

Finance and Fundraising

·         Work with the Treasurer and the Finance Committee to ensure the overall financial health and sustainability of IPWSO.

·         Work with the Treasurer and the Finance Committee to prepare budgets for review by the Board of Trustees and to enable IPWSO to operate within its financial means.

·         Seek to ensure that appropriate financial reports are submitted to the Charity Commission and other entities as required.

·         Support the work of the Fundraising Committee and strive to ensure a sustainable income from both IPWSO members and individual, corporate, philanthropic and government donors.

·         Build relationships with potential donors and prepare funding proposals.

·         Seek to provide high quality support to existing donors, by means including the preparation of regular reports and updates.

·         Seek out and build new income streams.

Staff, Trustee and Volunteer and Committee Support

·         Provide support to staff, trustees and volunteers to enable them to carry out their duties.

·         Deputise for other staff members during periods of leave.

·         Conduct annual reviews with staff.

·         Participate in the recruitment of new staff as required.

·         Provide support and advice to IPWSO committees and conference organisers.

Project Support

·         Seek to ensure that all IPWSO projects are designed and implemented in accordance with IPWSO’s mission and objectives.

·         Support IPWSO’s Project Managers and others who lead IPWSO projects and, if necessary, manage projects directly.

Person specification

Experience, Knowledge and Skills

Essential

Proficiency in English.

Experience of working in a leadership role in the charitable sector either as a CEO or as part of a wider Senior Management Team.

Ability to articulate a compelling vision to inspire others

Broad understanding of global development issues, geopolitical dynamics, and cultural nuances and able to take into account the diverse contexts in which IPWSO operates.

Strategic Thinking: experience of leading and or contributing towards strategic development as well as experience of organizational management and supporting change.

Collaborative approach: outstanding interpersonal and communication skills, with the ability to build and maintain positive relationships, based on mutual respect and shared goals.

Experience of managing budgets, financial planning, preparation of funding applications and report writing.

Experience of working with volunteers.

Desirable

Fluency in another language.

Experience of working in a leadership role in an international organisation within health or disability either as a CEO or as part of a wider Senior Management Team.

Knowledge / experience of PWS.

Willingness to travel internationally as needed to support IPWSO’s priorities.

An understanding of charity operations and governance structures in the UK.

Personal Attributes

Essential

Enthusiasm for IPWSO’s work and commitment to its vision, mission and values including dedication to equity, diversity, and inclusion.

Empathy for disadvantaged people.

Cultural sensitivity and respect. Confidence and ability to work well with people from different backgrounds from around the world.

Highly self-motivated and able to work on own initiative as well as part of a team.

Adaptability and flexibility. Able to navigate change and uncertainty. Able to accommodate international time zones as well as GMT for UK based staff. 20% of time may be outside of normal working hours.

Ethical leadership.

Resilience and determination.

Desirable

Desire to empower and mentor staff and foster a culture of learning, growth, and innovation.