EC1V, London
£45,000 per year FTE (circa £36,000 actual for 4 days a week)
Permanent, Part-time
Job description

This national charity is a small, rare disease charity that supports families and children affected by a group of devastating neurodegenerative diseases commonly known as Batten disease.

The organisation offers support and informed guidance to families and professionals who work with them as well as actively raising awareness.

A truly parent-led organisation, it was set up over 20 years ago by a group of parents and it has been a charity for 18 years. It is a small team comprising a CEO, two part-time Family Support Officers and a part-time Administrator. Support for families in a person centred way is absolutely at the heart of our work. 

As the patient organisation for those affected by Batten disease, this organisation also plays a key role around access to new treatments. A key role recently has been to work with families around a new drug for CLN2 Batten disease. 

The CEO is also responsible for developing and delivering the strategic aims of the BDFA, working with stakeholders across the UK to ensure that everyone who is affected by Batten disease can live life to the full and secure the care they need to support their needs.

To achieve these objectives, the CEO must create and deliver a sustainable financial strategy based on effective voluntary fundraising sources such as individuals, legacy donors, charitable trusts and corporate sponsors. The BDFA receives no statutory funding. 

The financial strategy must ensure that the organisation has sufficient resources to deliver its services and build up adequate levels of financial reserves.    

Job Purpose

To provide leadership and strategic direction to develop the BDFA, with the support of the Trustee Board, to meet the defined short and long term aims and objectives of the Association.

Main Tasks

  1. To provide the necessary daily and long-term leadership and direction to meet the Association’s aims and objectives.
  2. To increasingly develop and secure fundraising opportunities to continue to fund and to grow the work of the Association.  
  3. To build and grow the profile of the Association with stakeholders both in the UK and internationally by developing robust relationships and networking opportunities.
  4. To deliver efficient and effective management of the Association.
  5. To ensure that the Association’s funds are used effectively.
  6. To provide strong leadership and a robust working environment to enable the staff team to meet their potential and deliver an outstanding service to stakeholders.

Specific Responsibilities

  1. Strategic Planning
  • To develop and to deliver to the Board a realistic but also ambitious strategic business plan,resourced to meet the Association’s aims and objectives.
  • To monitor team performance and report to the Board.
  • To work with the Trustees to develop a robust, strong team to effectively govern the work of the Association.
  • To operationalise the strategic plans to ensure participation and ownership by the staff team.
  1. Developing Relationships and the position of the BDFA
  • To develop and build upon ongoing relationships with organisations, companies and the media to raise the profile of the BDFA and Batten disease both in the UK and on an international platform.
  • To provide strong leadership and build relationships to meet and resource the aims and objectives of the Association.
  • To be the face of the BDFA and act as an ambassador.
  • The CEO is a key figure leading on work around new treatments and must have the gravitas and interpersonal skills to negotiate a very stressful landscape, working with families at the heart of the process alongside NICE (the national institute of clinical excellence), the NHS and pharmaceutical companies.
  1. Leadership and Management
  • To lead, line manage and inspire the BDFA team ensuring that they are supported in their role and in their career development. 
  • To develop and implement robust processes for performance management and monitoring.
  • To monitor and minimise risk to the BDFA’s reputation and profile.
  • To comply with all regulatory and legal requirements for the BDFA ensuring a culture of good practice and robust governance.
  1. Fundraising and Revenue Development
  • To implement and monitor a Fundraising Strategy to achieve defined targets for income generation.
  • To personally secure new donors and sources of income.
  • To maintain relationships with current major donors and corporate funders
  • To work collaboratively with the Treasurer and the Board to deliver and review budgets, management accounts and enable the close monitoring of the financial performance of the Association.

Person Specification


  1. Experience of leading a small to medium sized charity preferably health or social care related.
  2. Experience of managing a small team
  3. Track record of delivering organisational growth
  4. Fundraising and experience of capacity building
  5. Experience of managing high level relationships with stakeholders
  6. Financial experience and literacy
  7. Clear and persuasive communicator
  8. Empathy and understanding of the needs of families living with a life-limiting diagnosis for their children
  9. Ability to be able to be hands on with families, talking to families at point of diagnosis and through bereavement. To be able to harness the parent voice and experience so they are leading the direction of the BDFA.


  1. Capable of being both strategic and build a reputation as a key figure in the rare disease community 
  2. Knowledge of rare diseases and development of therapies


More about Batten Disease Family Association
Batten Disease Family Association

The Batten Disease Family Association (BDFA) exists to enable everyone who is affected by Batten disease to live life to the full and to s... Read more

Refreshed on: 09 November 2019
Closed date: 24 November 2019
Tags: Senior Management, Business Development

The client requests no contact from agencies or media sales.