The International Fragile X Alliance (IFXA)

Fragile X Syndrome (FXS), is the most common, known inherited form of intellectual and learning disabilities, and affects approximately two million people worldwide.  Many, if not most, with the syndrome remain undiagnosed. Together with Fragile X Premutation Associated Conditions, including Fragile X-associated Tremor/Ataxia Syndrome (FXTAS) and Fragile X-associated Primary Ovarian Insufficiency (FXPOI), over 20 million men and women worldwide are affected by or at risk of developing a Fragile X-associated condition.

The IFXA has been formed for the purpose of mutual, organization-to-organization, support and its goals include:

• information exchange for existing national family associations/groups
• guidance in the formation of new national associations/groups
• better help for families already diagnosed with Fragile X conditions through new and more effective organizations
• sharing experiences to improve the ability of clinicians to make the proper diagnosis and treatment of Fragile X conditions
• helping to establish comprehensive and consistent standards for clinical care, therapies and treatment
• enhancing education and training for families and professionals who are affected by and/or interested in Fragile X conditions