Copyright © 2018 The Fragile X Society


Charity registration number 1127861 - The Fragile X Society Registered Charity and Limited Company Registered in England

Charity Registration SC047332 - The Fragile X Society Registered Charity in Scotland
Company registration number 6724061 - Registered office: Rood End House, 6 Stortford Road, Great Dunmow, Essex CM6 1DA


Job Description

Job Title:                Managing Director, The Fragile X Society

Responsible to:    Board of Directors, Fragile X Society

Salary:                    £35,000 - 40,000, commensurate with experience

Tenure:                  Full time, job-share will be considered

Hours:                    37 hours per week

Location:               Great Dunmow, Essex

The new Managing Director will work to deliver the strategy as set by the Board; oversee all staff, including those who support families and those affected by Fragile X; and manage the office.

The role includes developing and managing our fundraising strategy; oversight of annual accounts and working with the Treasurer and Board in setting budgets; and supporting our Administrative and Communications Coordinator and the Board communications sub-committee in regard to internal and external communications.

Please see full job description

About our charity 

Fragile X is a family of inherited genetic conditions, including Fragile X Syndrome: the most common inherited cause of learning disability. The Fragile X Society was formed in 1990 by families whose children had just been diagnosed with Fragile X Syndrome. The charity has now grown to consist of a team of dedicated employees and volunteers, supporting thousands of individuals and families.

Our vision is a world where people living with Fragile X are: 

  • Valued, included and have their individual needs met - and that Fragile X is recognised and understood by professionals and the public.

  • Not alone - that they have access to an active community of people who understand.

  • Empowered - through evidence-based knowledge about Fragile X.

Due to services’ and society's attitudes, a lack of awareness, and features caused by the condition, people living with Fragile X and their families face wide-ranging challenges. Families regularly tell us that generic support services do not understand their needs adequately, or that they feel lost in broader organisations relating to autism or learning disability. We are working to change this. 

Our aims are:

  • To provide information and practical guidance to support and empower individuals and families living with Fragile X Syndrome and Fragile X-associated conditions

  • To educate and inform the public and professionals about Fragile X in order to raise awareness and understanding of the syndrome and improve support for all individuals affected by Fragile X

  • To encourage research into all aspects of Fragile X through the participation of our family members in Fragile X studies and to publicise the results.

  • To raise funds to carry out our work



Schedule of Appointment:
  • Closing Date:         Friday, 14 February 2020, 5pm

  • Interviews:             10 March 2020 in Great Dunmow, venue to be confirmed.

  • Starting Date:         The successful applicant to begin work as soon as feasible thereafter, with an initial probation period of 6 months before the role becomes permanent.

To Apply

Please send applications in the form of covering letter, CV and names/contact details of three references to: Dr Kirsten Johnson (Chair, Board of Directors):

Job Vacancies

Managing Director

The Fragile X Society is seeking an enthusiastic Managing Director who will oversee fundraising efforts, manage our staff and office, and support communications. We are a small, friendly charity, with a lot of support from our volunteers and the wider Fragile X community.