Jobs for the Disability sector

Lead a national charity at a pivotal moment of change and make a life‑changing impact for individuals and families affected by rare craniofacial conditions. 

Headlines Craniofacial Support is a UK-based charity providing information, advice and support to individuals and families affected by craniosynostosis and other rare craniofacial conditions.  The charity works closely with professional partners, including the 5 NHS Designated Specialist Craniofacial Units across the UK.

Craniosynostosis is a condition where two or more of the plates in the skull fuse prematurely, requiring medical support from a young age. Around 350 children are born with craniosynostosis each year in the UK.

Established by group of parents in 1993, Headlines now has over 2,500 members.  Within our charity offer we send out regular newsletters and an annual magazine, Headline News.  We also support families to connect through events such as an annual Family Weekend, conferences and Days Out, and provide information through our helpline and access to psychological support.  We have private social media groups and specific groups within our membership who meet regularly including Cranio Dads, Young Persons Network and a Teens Group.

After 8 successful years, our current Director will be retiring in 2026 and we are now seeking an enthusiastic, inspirational and proactive individual to take up the reins.This is a rare opportunity to lead a well-established, respected national charity at an important moment of transition.

Strategic priorities for us, moving forward, include increasing our fundraising activities to ensure sustainability of the charity alongside the smooth running of our core activities in providing support, facilitating research and raising awareness.

Key responsibilities

The Executive Director will hold day-to-day responsibilities, working closely with the Chair and Trustee Board to provide effective leadership and operational management of the charity. Specifically, they will:

• Act as an ambassador for the charity, liaising with members, health professionals and with wider community and provide day-to-day management of Headlines staff and activities, setting objectives in line with the operational plan.
• Ensure compliance with safeguarding, data protection and other legal, statutory and regulatory requirements and responsibilities.
• Work on behalf of and with the Trustees to deliver the charity’s mission, goals, operational plans and long-term strategy,  and act as a positive leader and role model, managing and motivating Headlines staff,
• Ensure effective financial management of Headlines working closely with trustees and the treasurer to ensure financial security and appropriate allocation of funds.
• Manage and enhance the event programme to meet charity objectives, including identifying and meeting members’ priorities and raising awareness of craniofacial conditions.
• Develop opportunities for collaborative working and partnerships with other organisations for the benefit of people with craniosynostosis and rare craniofacial conditions.  This also includes work overseas, predominantly in Europe with our medical and charity partners.
• Oversee communications and marketing activities to raise the profile of Headlines, its work and the needs of its members.
• Identify opportunities for growth, developing projects and keeping policies relevant, to enhance and expand the work of Headlines.
• Be responsible for generating funds through innovative and cost-effective fundraising activities and grant applications to maintain the long-term success of the charity.

Person specification 

Essential criteria

• An understanding of the importance of the charity’s values and priorities.
• Evidence of inclusive, innovative and proactive leadership, with demonstrable experience of fundraising and income generation.
• Excellent organisational and interpersonal skills with experience organising events and activities.
• Experience of successfully managing budgets and developing new and sustainable funding streams.
• Excellent organisational, presentation and communication skills and the ability to write reports for public consumption and for statutory obligations.
• A high level of digital literacy skills with an understanding of online technology and the application of social media.
• Proven track record in managing, leading and motivating staff and volunteers.
• Willingness to operate a hybrid model of working with most work taking place from home, working remotely with stakeholders and across the UK/ internationally for specific events.
• Experience of working within the charity sector, ideally at a management level and/or within  financial management of the charitable sector, with sound knowledge of the relevant legal requirements and regulations applicable to a charitable organisation.

Desirable criteria

• Experience of working effectively with a Chair and Board of Trustees.
• Experience of working for a health-related organisation.
• An awareness of the principles of inclusivity, accessibility or experience of working with individuals with visible differences.
• Degree or equivalent.
• Experience of commissioning research and liaising with research bodies.

Other information

Headlines hosts events and fundraising activities throughout the whole of the UK. All Headlines staff are expected to work flexibly to support those activities as required, e.g. attendance at Annual Family Weekend, conferences, member events, supporter receptions and other related scientific meetings and conferences. This may occasionally require travel and overnight stays. In addition, all staff are expected to be self-servicing in terms of administration and basic digital skills. Please note that the list of duties is not exhaustive and additional responsibilities might occasionally arise and the workload can vary across the year