The two most useful sources of online information on Fragile X Syndrome are:
The National Fragile X Foundation website. This US-based foundation aims to unite the fragile X community through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for fragile X syndrome
FRAXA Research Foundation website. This US-based, parent-initiated research foundation supports scientific research aimed at finding treatments and a cure for fragile X syndrome. The website contains information on symptoms, cause, testing, treatment and research.
Links to Media Stories About Fragile X:
- Ben’s Question (pdf)
- The X Factor (pdf)
- Tandem bicycle to increase trail accessibility
- Article about the ‘No Longer Fragile’ programme in the IHC Community Moves magazine (pdf, see page 9)
- Article about a family‘s journey to diagnosis: Fragile X – A to X (see page 13)
To find out what’s happening in other countries, visit these support group websites: