Senior Families and Professionals Advisor

Senior Families and Professionals Advisor

Fragile X Society

Salary: £40,000 to £46,000 depending on experience
Hours: Part-time (22.5hours per week)
Location: Great Dunmow, Essex, with some flexible and hybrid working considered
Contract: Permanent

Help change lives for families affected by Fragile X

The Fragile X Society is the UK s leading charity supporting individuals and families affected by Fragile X syndrome and associated conditions, including FXTAS and FXPOI.

For more than 35 years we have provided trusted information, emotional support, and practical guidance to families across the UK. Our work connects families with clinicians, researchers, and services while helping professionals better understand Fragile X.

We are now looking to recruit a Senior Families and Professionals Advisor (Adult Enquiries) to join our small and dedicated team as part of a planned transition when our long serving advisor retires later this year.

This is a rare and rewarding opportunity to take on a respected specialist role supporting families navigating complex health, social care, and life transitions.

About the role

This is a senior advisory role supporting adults, families, carriers, and professionals affected by Fragile X conditions.

You will provide information, guidance, and emotional support to individuals and families across the UK, helping them navigate services such as adult social care, benefits, housing, health services, and transition into adulthood.

The role also plays an important part in ensuring that the Fragile X Society continues to provide trusted, accurate, and meaningful information for families and professionals.

A structured handover and training period will be provided by the current postholder to help transfer specialist knowledge.

Key responsibilities

You will:

• Lead the handling of adult and carrier enquiries including those relating to Fragile X associated conditions such as FXTAS
• Provide emotional support and practical guidance to families navigating complex situations
• Maintain up to date knowledge of adult benefits, legislation, and social care services
• Work with clinicians, services, and professional networks supporting people with Fragile X
• Ensure the Society s information resources and website content remain accurate and relevant
• Support colleagues through mentoring and case discussion where appropriate
• Contribute to the continued development of the Society s information and support services.

About you

We are looking for someone with experience in complex advisory or support work within areas such as:

• disability services
• adult social care
• learning disability
• health services
• rare disease charities
• advocacy or advice organisations.

You will also have:

• strong knowledge of UK benefits systems and adult social care
• excellent communication and listening skills
• high levels of emotional intelligence and resilience
• experience supporting people in complex or sensitive situations
• the ability to work both independently and collaboratively within a small team.

Previous knowledge of Fragile X is not required, but an interest in learning about rare genetic conditions and the lives of families affected by them is essential.

What we offer

Working at the Fragile X Society means being part of a values driven charity where your work genuinely changes lives.

We offer:

• Salary of £40,000 to £46,000 (pro-rata) depending on experience
• 25 days annual leave plus bank holidays (pro-rata)
• Pension contribution
• Flexible and hybrid working options where possible
• Professional development opportunities including rare disease and clinical learning
• A supportive and collaborative team environment.

The role also includes the opportunity to work closely with leading clinicians, researchers, and national rare disease networks.

About the Fragile X Society

The Fragile X Society supports thousands of families across the UK and works closely with clinicians, researchers, and policymakers to improve understanding and support for Fragile X conditions.

Our mission is to ensure that every family affected by Fragile X has access to reliable information, compassionate support, and a community that understands their journey.

How to applyTo apply, please send:

• your CV and supporting statement explaining your interest in the role and relevant experience.

Further information about the Society can be found on our website.