£27,000 - £30,000 per year
Permanent, Full-time
Job description


Head of Fundraising

The BDFA is an influential rare disease charity that supports children affected by Batten disease and their families as well as advocating for children across the rare disease sector.

Following a period of stabilisation we are taking the next steps in our journey. As part of this plan we are looking for a Head of Fundraising to expand the organisation and ensure its sustainability for the future.

Batten disease is a devastating life-limiting condition causing a loss of skills, epilepsy, childhood dementia and loss of vision. We support families from the point of diagnosis, through bereavement and beyond.

As the only patient organisation in the UK, we also play a crucial role in lobbying government around access to treatments, shaping policy and supporting research into all forms of Batten disease. The charity has a wider impact on the rare disease sector working with six other national organisations to support families with rare diseases and influence work around access to treatments and early diagnosis.

The BDFA is looking to diversify its income streams and we need a strong fundraiser who has a track record in securing trusts and foundations income.

This is an exciting opportunity play a key role in the charity and take it to the next level of its development. We are looking for an enthusiastic, empathic and innovative individual who can work closely with the CEO to achieve this exciting change. We are looking for somebody who can take the lead and grow our fundraising department to be bigger and better as the organisation grows with them.

Job Purpose

To lead on income generation for the organisation

Main Tasks

  • Co-ordinate and manage fundraising for the BDFA, leading on income generation from trusts and foundations
  • Build and manage relationships with charitable trusts, foundations and other funders
  • Manage the process from writing funding applications to reporting and maintaining funder relationships
  • Support the CEO to build and manage high profile and high net worth individuals as potential donors to the organisation
  • Continuously develop the organisation’s strategy collaboratively across departments, growing new opportunities for the BDFA
  • Support the board on fundraising activities with external groups to ensure they are in line with the institute of Fundraising guidelines and strategically sound

Closing date: 30th September 2020.

How to apply: Please click on the 'Apply with CharityJob' button to submit your CV and cover letter. Applications that do not include a cover letter will not be considered.








More about The Batten Disease Family Association
The Batten Disease Family Association

The Batten Disease Family Association (BDFA) is a family centred organisation, set up 22 years ago by parents of children with Batten disease. ... Read more

Posted on: 15 September 2020
Closed date: 07 October 2020
Tags: Fundraising

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