We are looking for a dedicated, empathic and organised person to join our growing family support team here at the BDFA. This is a home-based role (anywhere in the UK) and part-time at 21 hours per week. This role is home based but will involve some travel in order to support our families who live throughout the UK as well as attending our central London office and our annual conference.
The BDFA is the only patient organisation in the UK for families affected by Batten disease, a rare and terminal neurodegenerative condition that affects children and young people.
This role as Family Support Worker will include daily contact with families and supporting their needs, logging information, providing support and training for schools and liaising with professionals such as nurses, social workers and teachers. You will work with stakeholders in social care, health and education as well as peers in the rare disease space. The successful candidate will work under the guidance of our Head of Family Support and Advocacy.
This job requires a resilient and empathic individual who has passion for supporting those in our Batten community, with the desire to reach and support our growing Batten community.