About Fragile X International

Fragile X International is an International Non-Profit Organization (INPO), registered in Belgium. Read our Statutes here.

Vision

We recognise that all people with Fragile X are of equal value and entitled to the same opportunities as everyone else. Our vision is to help those living with Fragile X Syndrome (FXS), Fragile X Premutation Associated Conditions (FXPAC) and their families anywhere in the world enjoy a happy life.

Fragile X International is a network where the power to act is in the hands of those with FX. FX is not a disease but a condition: we will promote social inclusion of FX at all levels of society. We will advocate that those living with FXS and FXPAC should not have to conform to society but society should embrace them for who they are. To further this aim, we encourage all of our family organisations to include at least one person with FXS on their Board.

Mission

Fragile X International is a network of country family organisations who will work together to promote, support and strengthen the FX identity as an added value to society. We aim to increase knowledge about the strengths of people with FXS; highlight the areas where they may need support; raise awareness and encourage research around FXPAC; and share knowledge in the hope that one day FX will be recognised for the benefit it brings to society.

Independence

Fragile X International has a policy not to join consortium or co-sponsor clinical drug trials. This is in order to maintain the independence of the patient voice. FraXI represents family organisations and those living with FXS. Our vision and mission is to create a world where all those living with FXS are recognised for the value they bring to society. We support research and work with clinicians, but need to stay appropriately distanced from being directly linked to particular drug trials.

Milestones