Fragile X Society

Who we are

The Fragile X Society aims to improve the lives of those affected by Fragile X and associated conditions by providing information and continued support to families and professionals they work with. Working together with those affected, the Society supports an inclusive community of people who understand the specific needs of Fragile X.

Our Aims 

To provide information and practical guidance to support and empower individuals and families living with Fragile X Syndrome and Fragile X Premutation Associated Conditions.

To educate and inform the public and professionals about Fragile X, raising awareness and understanding and improving support for all individuals affected by Fragile X.

To encourage research into all aspects of Fragile X through working with researchers, encouraging the participation of our family members in Fragile X studies and publicising the results.

Our culture and values

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 – because they have access to an active community of people who understand.

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

Due to the attitudes of services and society, a lack of awareness, and features caused by the condition, those affected by Fragile X Syndrome face wide-ranging challenges. Families regularly tell us that generic supports and services did not understand their needs adequately, or that they felt lost in broader organisations relating to autism or learning disabilities. We want to change this. 

Equality, diversity and inclusion policy

The Fragile X Society:

ACCEPTS that in society certain groups or individuals are denied equality on the grounds of race, gender, marital status, caring responsibilities, disability, gender re-assignment, age, social class, sexual orientation and religion/belief or any other factor irrelevant to the purpose in view and is committed to complying with the Equalities Act 2010 with such other Acts and statutory requirements furthering equality of opportunity for all as also apply to its charitable activities.

RECOGNISES that it has moral and social responsibilities that go beyond the provisions of the above-mentioned Acts and Regulations, and that it should support and contribute to the wider process of change through all aspects of its work and practices in order to eliminate discrimination and promote equality and diversity.

IS COMMITTED to taking positive steps to ensure that:

• all people are treated with dignity and respect, valuing the diversity of all;
• equality of opportunity and diversity is promoted;
• services are accessible, appropriate and delivered fairly to all;
• the mix of its employees, volunteers and management committees reflects, as far as possible, the broad mix of the population of its local community;
• traditionally disadvantaged sections of the community are encouraged to participate in policy decisions about, and the management of the services provided.