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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
Applicants need to submit the following:
• CV outlining your employment history and any relevant academic, professional or other
qualifications.
• Name and addresses of two referees, with at least one coming from your most recent employer.
• A supporting document demonstrating how you meet the essential and/or desirable criteria set out in the person
specification, and why you are interested in working for Headlines.
Shortlist interviews will take place online via videocall, with successful candidates progressing to an in-person interview in London, on a date to be confirmed.
Closing date for applications: Saturday 20th June at midnight
Headlines is the leading UK charity supporting people with craniosynostosis and other rare craniofacial conditions.
The client requests no contact from agencies or media sales.
We are looking for an experienced and compassionate Support Services Manager to lead BBS UK’s support services for children, adults and families living with Bardet-Biedl syndrome (BBS).
BBS UK is a national charity supporting people affected by this rare genetic condition. We work closely with NHS specialist clinics and other services to help individuals and families access the support they need and navigate health, education, social care and welfare systems.
This is an exciting opportunity to lead a small, dedicated team providing practical support, advocacy and guidance to people living with BBS and their families.
The role includes team leadership, safeguarding responsibility and service development. You will help ensure people receive safe, responsive and person-centred support while continuing to improve and strengthen our services.
About the Role
As Support Services Manager, you will oversee BBS UK’s clinics support and advice services. Working closely with the CEO, NHS clinics and partner organisations, you will:
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Lead and support a small remote-working team
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Provide supervision and safeguarding leadership to Patient Liaison Officers and Advice Workers
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Act as Designated Safeguarding Lead (DSL) for the organisation
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Oversee caseloads, service quality and risk management
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Support staff wellbeing, learning and development
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Build positive relationships with NHS and external partners
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Help develop and improve BBS UK’s support services
This is a home-based role with travel to specialist clinics in London and Birmingham, plus occasional meetings and events. Travel expenses will be reimbursed in line with BBS UK policies.
About You
We are looking for someone who:
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Has experience managing a team within health, social care, welfare or voluntary sector services
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Has experience providing leadership, supervision or safeguarding oversight within a support service setting
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Has strong safeguarding knowledge and can make sound decisions in complex situations
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Communicates well and builds positive working relationships
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Can manage competing priorities and support a busy team
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Is organised, practical and calm under pressure
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Is reflective, approachable and supportive
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Shares our commitment to inclusive, person-centred support
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Wants to make a meaningful difference to people living with BBS
Why Join BBS UK?
BBS UK is a small, supportive charity making a real difference to the lives of people affected by Bardet-Biedl Syndrome. By joining us, you will:
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Make a direct and meaningful difference to children, adults and families living with BBS
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Be part of a supportive and values-driven team
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Work flexibly from home while contributing to a nationally recognised rare disease support service
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Receive ongoing training, supervision and professional development
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Help shape the future of support services for people living with BBS
Additional Information
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An enhanced DBS check is required for this role
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Some evening or weekend work may occasionally be required, with time off in lieu provided
If you’re ready to use your skills and experience to make a meaningful impact, we’d love to hear from you. If you would like to discuss the role before applying, details can be found in the application pack.
Application Deadline: Sunday 7th June 2026 (midnight)
Interviews: Expected to take place in London on 16th and 18th June 2026
We support and empower our community, champion wellbeing, and raise awareness, ensuring understanding, support, and hope for all affected.

The client requests no contact from agencies or media sales.