Family Support Coordinator

Family Support Coordinator

Dravet Syndrome UK

Key Information

• Location: Home-based/remote,  with travel to national events throughout the year both for the Family Services and occasional travel for the wider needs of the organisation
• Salary: £28,000 - £32,000 per annum
• Hours: 40 hours per week
• Contract: Permanent
• Working Pattern: Monday-Friday, 9am-5.30pm, with occasional evenings and weekends (TOIL provided) 

About Us

Dravet Syndrome UK (DSUK) is the leading UK charity supporting people affected by Dravet Syndrome, a rare and severe form of epilepsy that impacts the whole family. Founded by parents in 2008, we provide family support, professional education and fund vital research to improve lives and create hope for the future. [Family Sup...JD v1 (1) | Word]

About the Role

We're looking for a compassionate and organised Family Support Coordinator to help deliver practical, emotional and financial support to families affected by Dravet Syndrome.

Working closely with the Head of Family Services, you'll be a key point of contact for families, supporting enquiries, coordinating grants, managing online communities, helping organise family events, and ensuring families can access the information and support they need.

This is a varied and rewarding role combining family support, community engagement, event coordination and administration. 

Key Responsibilities

Family Support

• Manage a caseload of families, providing practical and emotional support.
• Respond to enquiries and signpost families to appropriate services.
• Support newly diagnosed families, bereaved families, and those navigating transition to adulthood.
• Maintain accurate records using the charity's CRM system.

Grants & Community Support

• Coordinate family grant applications and payments.
• Moderate and support the charity's private Facebook community.
• Collect feedback and help improve family services.
• Escalate safeguarding concerns in line with policy.

Events & Engagement

• Support the delivery of the Annual Family Weekend Away and other family events.
• Assist with webinars, support programmes and educational activities.
• Build positive relationships with families and volunteers.
• Attend key family-facing events across the year. 

Administration

• Support reporting, record management and service administration.
• Ensure compliance with safeguarding, GDPR and organisational policies.
• Attend team meetings, training and charity events. 

About You

Essential

• Experience supporting children, adults and families.
• Experience supporting people with complex medical, learning or additional needs.
• Strong communication, organisational and relationship-building skills.
• Ability to provide empathetic, person-centred support.
• Experience using Microsoft Office and CRM/database systems.
• Understanding of safeguarding, confidentiality and GDPR.
• Ability to work independently and manage competing priorities.
• Willingness to travel and work occasional evenings and weekends.

Desirable

• Background in Health & Social Care, Mental Health, Community Development, Counselling or Education.
• Experience organising events or community activities.
• Knowledge of Dravet Syndrome or other neurological conditions.
• Full UK driving licence and access to a vehicle. 

Why Join Us?

• Make a meaningful difference to families affected by a rare and life-limiting condition.
• Join a supportive and flexible remote-working charity.
• Play a key role in delivering services that support hundreds of families across the UK.
• Be part of a passionate team committed to improving lives through support, education and research.