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Head of Family Support and Advocacy
The Batten Disease Family Association

Job Description

This is an opportunity for a passionate and dynamic professional to lead and develop family support and advocacy at a national  rare disease charity. You will join the charity is at a pivotal point of its development and this role is core to our purpose as a family centred organisation. The charity is looking to grow its support to families in a person-centred and creative way and you will lead this growth working closely with the CEO. You will ensure we are working in the most collaborative way possible, working closely with families and stakeholders to ensure the BDFA is offering an excellent and integrated service. 

The charity supports families who have a child with Batten disease, a rare, terminal, neurodegenerative condition.

The BDFA office is in London so the successful candidate will need to be within easy travelling distance of central London. However this role will involve extensive travel in order to support our families who live throughout the UK. This will be a flexible role with some time spent in the office working alongside the CEO, at home and travelling to visit families and key stakeholders. The role involves supporting families from the point of diagnosis, liaising with health, education and social care, through transition and palliative care. 

Job Purpose

  • To lead on all aspects of support and advocacy, ensuring that families with Batten disease in the UK have a responsive and holistic service from the BDFA
  • To support and empower families and children affected by Batten disease at home, school and in social care and health settings.  Supporting families to ensure that they have the best quality of care possible. 
  • To provide “Batten specific” training for professionals who work with children with Batten disease.
  • To establish an effective framework for service delivery focusing on a person-centred approach
  • To capture outputs and outcomes of the service for internal and external reporting and lead on service improvement and expansion alongside the CEO

The client requests no contact from agencies or media sales.